National Autism

Indicators Report
Developmental Disability Services
and Outcomes in Adulthood
2017
 A.J. DREXEL AUTISM INSTITUTE, DREXEL UNIVERSITY

Mission
The A.J. Drexel Autism Institute is the first research organization built around a public health science approach to understanding
and addressing the challenges of autism spectrum disorder (ASD) across the lifespan.

The Autism Institute’s Life Course Outcomes Program (LCO) envisions a future where people on the autism spectrum are valued
as contributing members of our communities who have roles to play and dreams to pursue. LCO is building a base of knowledge
about the things other than clinical interventions that promote positive outcomes for people on the autism spectrum and their
families and communities.

For more information about us, please visit our website: http://drexel.edu/AutismOutcomes

How to cite this report

Roux, Anne M., Rast, Jessica E., Anderson, Kristy A., and Shattuck, Paul T. National Autism Indicators Report: Developmental
Disability Services and Outcomes in Adulthood. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel
University, 2017.

©2017 Drexel University and the authors. All rights reserved. The publication may be copied and disseminated without charge in
part or whole as long as appropriate acknowledgement and citation are given.

National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes | 3
National Autism Indicators Report:
Developmental Disability Services and Outcomes in Adulthood
2017

A publication of A.J. Drexel Autism Institute’s Life Course Outcomes Program, Drexel University

Program Director Paul T. Shattuck, PhD

Authors Anne M. Roux, MPH, MA; Jessica E. Rast, MPH; Kristy A. Anderson, MSW;
and Paul T. Shattuck, PhD, MSSW

Acknowledgements
Graphic Design: Lisa Cain
Data Visualization: Stephanie Evergreen
Editing: Bushraa Khatib
Student Intern: Vijay Murthy

Report Advisory Panel

Samantha Crane, JD, Director of Public Policy, Autistic Self Advocacy Network
Tonia Ferguson, Esq., Vice President of Public Policy and Advocacy, Autism Society of America
Angela Lello, MPAff, Senior Director for Public Policy, Autism Speaks
Katy Beh Neas, Vice President of Government Relation, Easter Seals Office of Public Affairs
Kelly Nye-Lengerman, PhD, Institute on Community Integration, University of Minnesota
Robert Schmus, MSW, A.J. Drexel Autism Institute Community Advisory Board
Jan Serak, MA, CEO of WI FACETS; Co-Director, WI Parent Training & Information Center
Michael Shor, MSW, The Mental and Social Health Center

A special thank you to Dorothy Hiersteiner and Alexandra Bonardi at the Human Services Research Institute (HSRI)
who provided technical assistance regarding the ACS survey and dataset, as well as reviewing and providing feedback
on drafts.

Funding Acknowledgement: This report was made possible by a generous private donation to the Life Course Outcomes Research Program.
This project was also supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services
(HHS) under grant number, UA6MC27364, and title, Health Care Transitions Research Network for Youth and Young Adults with Autism Spectrum
Disorders for the grant amount of $900,000. This information or content and conclusions are those of the author and should not be construed as the
official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

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Letter from the Program Director
Paul T. Shattuck, PhD

Responding to the urgent need for research across the

life course

Pressing facts surround this National Autism Indicators Report:

• About half a million youth on the autism spectrum will age into adulthood over the next decade.
• The majority of a typical life occurs in adulthood.
• Only 1% of all autism research funding supports investigation of topics related to adulthood and aging,
according to a 2017 report from the Interagency Autism Coordinating Committee.
• Adulthood is the stage of life we know least about with respect to autism research, policy and practice.

In this Indicators Report, we focus on the needs of a subgroup of adults we know very little about -- those
with more severe challenges, who are least able to speak for themselves and who depend on essential public
services. This report includes adults who have just left the special education system, and others who are at
the end of their working years - enabling us to look at differences in services and outcomes across the life
course for people in over half of our nation’s states.

State Developmental Disability (DD) agencies combine federal and state dollars to provide services that are
supposed to foster community participation and access to vital healthcare and employment services. Major
legislative changes affecting employment and residential services have recently occurred and more potential
changes are being discussed related to health care and community-based supports. However, we are unaware
of any significant investments to assess whether these changes “move the needle” on outcomes. Thus, we
need state- and national-level statistics like the ones in this report now more than ever.

We aim to raise awareness about the kinds of services people need, the kinds of services they get and how
life is turning out for people across the life course and across different types of community settings. Because
this range of topics is so under-studied this report raises more questions than it answers. Our findings
highlight the urgent need for additional research to understand how to support quality of life across the life
course. A common saying is “What gets measured gets done.” Billions are spent each year on services for
people on the autism spectrum. If we are not measuring outcomes that matter at a community level then it
is hard to set meaningful goals for improvement or to know if things are getting better or worse over time.

Paul T. Shattuck

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National Autism Indicators Report:
Developmental Disability Services and Outcomes in Adulthood
2017
Table of Contents

Executive Summary
The Charge............................................................................................................................8
Key Findings 2017...............................................................................................................11
Background.........................................................................................................................16

DD Service Utilization and Outcomes

Characteristics: Adults with ASD who use Developmental Disability Services.....................23
Use of Developmental Disability Services.............................................................................29
Health and Health Care.......................................................................................................37
Mental Health and Health Care...........................................................................................43
Employment and Other Day Activities................................................................................49
Living Arrangements............................................................................................................59
Social and Community Participation...................................................................................65
Independence and Rights.....................................................................................................71

Looking Forward: Conclusions and Recommendations for Future Research......................... 75

Appendix: Methods....................................................................................................................76

A note about wording. In this report, we use the term autism spectrum disorder, or ASD, because
it was the official wording in the survey and because it reflects the wide range of characteristics,
impairments, and strengths seen in people with ASD. The National Core Indicators Adult Consumer
Survey (ACS) asked whether “autism spectrum disorder (e.g., Autism, Asperger Syndrome,
Pervasive Developmental Disorder)” was recorded in an individual’s state records. The most recent
edition of the Diagnostic and Statistical Manual (DSM-5) also uses autism spectrum disorder and
discontinued the use of Asperger’s Disorder and Autistic Disorder.

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Executive Summary
Developmental Disability Services and Outcomes in Adulthood
2017

The charge
Changes in diagnostic definitions and public awareness over The importance of indicators
the past few decades have contributed to dramatic growth in
Indicators are like gauges. They help us understand
the number of children identified as having an autism spectrum
the status or condition of something. Indicators
disorder (ASD). A growing body of research shows how youth
research helps us understand the scope and magnitude
with ASD fare as they enter adulthood. As seen in our 2015 and
of problems, resources needed to fix problems, and
2016 National Autism Indicators Reports, many adults with
whether we are making progress toward solving them.
ASD have a difficult time achieving employment, continued
This report is an almanac of currently available national
education, and independent living. This year’s report adds to
indicators detailing the experiences of adults with ASD
what we know about the characteristics of adults with ASD, the
who use Developmental Disability (DD) services.
quality of their lives, the opportunities they have to participate in
These indicators come from a survey of people from 31
their communities, their ability to exercise choice in their lives,
states who were receiving services from their state’s DD
and their access to needed services.
agency in 2014-15.

Aims of this report

• Describe key characteristics of adults with ASD who use state
DD services and key indicators about their service experiences
and outcomes.
• Understand how service use and outcomes differ across
subgroups of people with ASD.
• Compare experiences and outcomes of adults with ASD versus
adults with other types of developmental disabilities.

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Data for this report
Here are some things you should know about the data before What is a developmental disability
reading this report. More background about the data is available (DD)?
in the Methods chapter.
According to federal law, developmental disabilities are
severe, chronic disabilities attributable to mental and/
• Data in this report came from the Adult Consumer Survey
or physical impairment which manifest before age 22
(ACS), which is part of the National Core Indicators (NCI).
and are likely to continue indefinitely. They result in
NCI is a collaborative effort of the National Association of
substantial limitations in three or more areas: self-care,
State Directors of Developmental Disabilities Services and the
receptive and expressive language, learning, mobility,
Human Services Research Institute.
self-direction, capacity for independent living, and
• We did not conduct this survey ourselves. We are reporting economic self-sufficiency, as well as the continuous
results based on our independent analyses of ACS survey data. need for individually planned and coordinated services.
(Source: Developmental Disabilities Assistance and Bill
• Our findings describe the 3,520 working-age adults (18-64 of Rights Act of 2000). People with autism spectrum
years) with ASD, who were no longer in high school, and disorder (ASD) may qualify as having a DD and might
were using DD services when they participated in the 2014- receive services through a DD agency.
2015 ACS survey between July 1, 2014, and June 30, 2015.
• In each state (or smaller region), the survey sampled a subset
of adults from people who received at least one service (in What are DD services?
addition to case management) from their state DD agency.
DD services are services individuals with intellectual
• ACS information was collected through review of state or developmental disabilities (I/DD) might receive
documents, interviews with people who received DD services, to maximize their well-being and participation in the
and/or interviews with someone who knew the person well if community. These services are administered through
needed. DD agencies which are local agencies that provide
services for people with DDs. Read more about DD
• The ACS is not a nationally representative survey of all adults
services in the Background chapter.
with ASD. Findings cannot be used to make inferences to the
general population of individuals on the autism spectrum.

Who is represented in this report?

The people with ASD in this report do not represent all adults
with ASD. This report’s findings only represent people who were
able to access DD services because they had a significant level
of functional impairment, were eligible for DD services in their
state, and they (or their caregivers) were able to navigate the steps
to get services. This report includes people with ASD who used
DD services in 31 states, Washington DC, and the Mid-East
Ohio Regional Council (MEORC).

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Thirty one states, the District of Columbia, and the Mid-East Ohio Regional
Council (MEORC) participated in the ACS 2014-15.

MEORC
Washington
DC

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Key Findings
Developmental Disability Services and Outcomes in Adulthood
2017

We used data from the National Core Indicators - Adult Consumer Survey (ACS) to study the services
experiences and outcomes of adults with autism spectrum disorder (ASD) who used state Developmental
Disability (DD) services during the 2014/2015 survey cycle. We summarize key issues and findings. Detailed
information and citations to related research can be found in the chapters that follow in this report.

Characteristics

A total of 3,520 adults with ASD who were ages 18-64 and not in public school participated in the 2014-2015
ACS survey. If an adult with ASD did not want to respond to the survey or was unable to respond, a proxy who
knew them well could respond to a portion of the survey on their behalf. We note that the group of people with
ASD who received DD services were more likely to also have an intellectual disability (ID) compared to the
overall population of people with autism. Therefore, the findings in this report represent people with a greater
level of challenges and impairments than all individuals with ASD.
Our key findings:
• The average age of adults with ASD who participated in the survey was 34 years - eight years younger than DD
service users who did not have ASD.
• Half (51%) of middle-aged adults (45-64 years) with ASD had severe or profound intellectual disability
(ID), compared to only 16% of young adults (18-24 years) with ASD.
• In some states all adults with ASD also had ID, while in other states approximately half had ID - likely
reflecting differences in state policy about who qualifies for DD services.
• Younger adults with ASD were more likely to use spoken language as their primary means of expression than
middle-aged adults with ASD.

By the numbers: Autism spectrum disorder in the Adult Consumer Survey

Survey
participants with
ASD (n=4,187) Who were ages Who had valid
18-64 (n=4,089) answers to survey
questions Who were no
(n=4,060) longer in public
school (n=3,520)

ACS participants used services Valid answers meant that the respondent answered at least one
funded by a state DD agency question and, if an adult with ASD answered the questions, the
and completed a survey during surveyor felt the person understood the questions and gave
fiscal year 2014-2015. consistent answers. Read more about this in the Methods appendix.

Adapted from infographic by Nye-Lengerman, K.M. (2015). Doctoral dissertation.

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Key Findings (continued)

Use of DD Services

We already know that youth with ASD lose access to the services that they may have had through special
education once they leave high school. Services and programs available through state and local DD agencies vary
widely. Compared to the overall ASD population, those who qualify for state DD services as adults tend to have
higher levels of cognitive and functional impairments. They may also have different needs than their peers with
other types of DDs.
Our key findings:
• Of the services that the ACS asked about, the most common services adults with ASD received were health
care, dental care, and transportation. About half of adults with ASD received information about benefits or
insurance (54%), and services for social relationships or meeting people (49%).
• Almost half (49%) of adults with ASD used six or more services funded by a state DD agency. Those with
ASD used the same types of DD services, and at the same rate, as other DD service users who did not have
ASD.
• Half (51%) of adults with ASD who lived with parents or relatives received respite care services. Younger
participants with ASD (18-24 years) were more likely to receive respite care than middle-aged individuals (45-
64 years).
• Overall, 25% of ACS participants with ASD reported that they did not receive all of the services they
needed.

Health and Health Care

There is a growing body of knowledge about the health of adults with ASD. Recent studies have found high rates
of many chronic health conditions among adults with ASD including epilepsy, high cholesterol, hypertension,
and others. Medication rates and use of an emergency department are also higher compared to adults without
ASD. There is a known need for physician education and strategies for assisting adults with ASD in their health
care encounters.
Our key findings:
• Half (51%) of adults with ASD had at least one health condition in addition to ASD from a list of 11
conditions.
• More than half (58%) of adults with ASD had a Body Mass Index that placed them in the overweight or obese
category. Those with ASD who had severe or profound ID or who used nonverbal communication were less
likely to engage in moderate physical activity.
• Most had annual health and dental check-ups, but vision checks, cancer screenings, and flu vaccination were
less common for those with ASD than among other DD service users.

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Key Findings (continued)

Mental Health and Health Care

We already know that rates of co-occurring mental health conditions are higher in people with ASD compared
to the general population, particularly in regard to anxiety, depression, and schizophrenia. The challenges posed
by these additional conditions can make it more difficult to work, live independently, and participate in the
community. Medications are often used to address co-occurring mental health conditions.
Our key findings:
• Over half (54%) of adults with ASD had at least one mental health condition (including anxiety, mood
disorder, psychotic disorder, and/or other mental illness) in addition to ASD.
• Almost half (46%) of adults with ASD had behavioral challenges including disruptive, self-injurious, and/or
destructive behaviors.
• Six in 10 adults with ASD (64%) took medication for mood disorders, anxiety and/or psychotic disorder,
and/or behavioral challenges. This rate was much higher than among other DD service users.
• 44% of adults with ASD took medications for behavioral challenges - almost twice the rate of other DD
service users.

Employment and Other Day Activities

Finding and keeping a job is hard for many people with ASD. Navigating the social dynamics of the workplace,
coping with sensory overload, organizing and completing tasks, and communicating with coworkers may be
challenging. State DD services are a key source of public funding for the long-term supports and services that
people with ASD may need to participate in work and other types of day activities.
Our key findings:
• Paid, community-based employment was the least common outcome for adults with autism spectrum
disorder (ASD). Only 14% held a job for pay in the community. About one-fourth of adults with ASD had
community employment as a goal in their service plan.
• Over half (54%) participated in an unpaid activity in a facility (where most other workers had disabilities).
• One-fourth (27%) had no work or day activities, in either community-based or facility-based settings, in the
two weeks prior to the ACS.

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Key Findings (continued)

Living Arrangements

Where people with intellectual or developmental disabilities (I/DD) tend to live has changed dramatically over
the last 50 years. More people with I/DD now live in the community in a home or a group home. They may
receive assistance from direct support staff in their home, but few live in large institutional settings that are
directly operated by states.
Our key findings:
• Almost half (49%) of adults with ASD lived in the home of a parent or relative. Many of those who lived
with their families had been there for more than 5 years.
• Nearly four in ten adults with ASD who lived with parents or relatives received no paid in-home supports. Of
these, 37% indicated they needed some type of supports or services.
• One-fourth (27%) lived in group homes with up to 15 people who also had disabilities. It was uncommon for
adults with ASD to live in institutions.

Social and Community Participation

We know that adults with ASD report a strong desire for acceptance within their communities at large, paired
with opportunities to connect with other people who share their common interests. There is no single level or type
of social and community inclusion that is the right fit for all adults with ASD. Federal laws and Supreme Court
decisions affirm the belief that people should be able to participate in their communities and have meaningful
relationships and friendships to the extent that they choose and in the ways that they prefer.
Our key findings:
• Most adults with ASD (over 80%) got out at least monthly to shop, eat out, run errands, or for entertainment.
Almost half had been on vacation during the last year.
• Most self-respondents with ASD (84%) said they always had a way to get to where they wanted to go - usually
getting a ride from family or friends.
• Less than half (43%) of adults chose their daily schedule on their own in regard to when they woke up,
ate, or went to sleep; 40% could choose how to spend their money on their own.
• Three-fourths of self-respondents (72%) said they had a friend who was not a family member or staff.
However, 41% also reported feeling lonely sometimes.

Independence and Rights

This final chapter explores the rights of adults with ASD who participated in the ACS and their experiences with
independence.
Our key findings:
• Over half (53%) of adults in the ACS with ASD had a limited or full legal (court-appointed) guardian.
• Almost three quarters (74%) of adults with ASD could be alone with guests or visitors in their home.

Read our thoughts about these findings and our research

recommendations in the Looking Ahead chapter (page 75).

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At a glance — Outcomes of adults with ASD (18-64 years)
who received DD services
Did not receive Received respite services Average number
all needed services of services received

DD Service
25%
Reportedly did not receive all the
51%
Received respite care if they
6
Was the average number of
Access services they felt they needed. lived in the home of a parent services funded by state or county
or relative. agencies from a list of 13.

Had co-occurring health Had co-occurring mental Took medication to treat

conditions health conditions mental health conditions

51% 54% 64%

Health and Had at least one additional Had anxiety, mood disorder, Took medication for either mood
Mental Health health condition from a list psychotic disorder, or “other disorders, anxiety, and/or psychotic
of 11 common conditions. mental illness/psychiatric disorder, and/or behavioral
diagnosis” in addition to ASD. challenges.

Had a paid job in the Were in unpaid, activities Had no work or activity
community in facilities

Employment 14% 42% 27%

and Other Day Worked in the community for Participated in unpaid activities Had no work or activities
Activities pay in settings that also employed in facilities with others with in the previous two
people without disabilities. disabilities (sometimes called weeks in community or
day programs). facility-based settings.

Lived with a parent Lived in a group home No funding for services in a

or family parent or relative’s home

49% 27% 38%

Living Lived in the home of parents or Lived in a group home Of those who lived with
Arrangements other relatives. Of these, 81% consisting of 1 to 15 people with parents or relatives received
had been there over 5 years. disabilities. 31% of these were no paid in-home supports.
in 1-3 person homes.

Got out in the community Had a friend Chose their schedule

for themselves

Social and
80%
Shopped, dined out, or did
72%
Of the subset of adults who
43%
Made their own choices about
Community errands in the community at least could self-report answers to when to get up, when to eat,
Participation once a month. questions said they had a friend and when to go to sleep. 40%
who was not a family member chose what to do with their
or a staff person. spending money.

Had a guardian Had some social

(limited or full) independence
Read more about each

Independence
and Rights
53%
Had a court-appointed guardian
74%
Could be alone with friends
of these indicators in the
chapters that follow.

on a limited or full basis. or visitors in their home.

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Background

The issues • pursue meaningful and productive lives;

• contribute to their families, communities, and States, and the
Growing service needs Nation;
Young adults with autism spectrum disorder (ASD) often want • have interdependent friendships and relationships with other
the same things as their peers without ASD after high school - persons;
to live away from their parent’s home, earn a living, and have • live free of abuse, neglect, financial and sexual exploitation,
opportunities for additional education. In our 2015 National and violations of their legal and human rights; and
Autism Indicators Report, we told you about the 50,000 youth • achieve full integration and inclusion in society, in an
with ASD who exit high school each year in the U.S.[1] During individualized manner, consistent with the unique strengths,
high school, many received special education services with a goal resources, priorities, concerns, abilities, and capabilities of
of finding employment, continuing their education, and/or living each individual.”[5]
independently during adulthood. But over one-third of transition-
age youth with ASD did not get a job or continue their education
between high school and their early twenties. What are the main sources of services and
We also reported on the “services cliff” that many youth experience funding to support adults with ASD?
after high school, when they lose access to the services they had Even though there is no single source of regulation and oversight
through special education. In general, a far lower percentage of of developmental disabilities (DD) services at the federal level,
adults with ASD receive services compared to those who received there are several key agencies that provide assistance to adults with
services through special education during high school.[1-3] One DDs after they leave high school
in four of those who had no job or continued schooling after high
• We reported on the Vocational Rehabilitation (VR) service
school also received no services during that same period - services
system in our 2016 National Autism Indicators Report. VR
that might have helped them connect to jobs or schooling.[1] Our
provides short-term supports to help people find and keep a
2015 Indicators Report also noted that outcomes were generally
job.[6]
worse for young adults with more severe challenges and that our
knowledge base virtually ends at the age of 25. This new report • State Developmental Disability (DD) agencies are a source
was designed to help fill those voids. of short and long-term services and service coordination
to support employment, community living, relationships
(socialization), transportation, and other needs.[7] Types of
services available through DD agencies vary across states. DD
Importance of holistic, lifespan services services are often funded by Medicaid. (More on this below.)
When we think about services and outcomes, it is important to • The Social Security Administration (SSA) provides cash
consider them holistically, as the various parts of our lives are all supports to assist some adults with DDs who have financial
interconnected. Education impacts employment... Employment needs through the Supplemental Security Income (SSI) and
impacts living arrangements… Living arrangements impact social Social Security Disability Insurance (SSDI) programs. SSA
participation… and so on. Very few studies have holistically also funds incentives to help people with disabilities work
explored related domains of life - like where people live, their level without risking the loss of their medical and financial public
of satisfaction and well-being, and opportunities for choice in the benefits.
lives of adults with ASD.[4]

Our report examines indicators across many of the domains These agencies operate independently - each with their own
identified as priorities in the Developmental Disabilities Assistance eligibility criteria and services. This results in a fragmented and
and Bill of Rights Act of 2000 (DD Act), which specifies that incomplete system of supports for individuals with intellectual or
“...the goals of the Nation properly include a goal of providing developmental disabilities (I/DD) and their families. Individuals
individuals with developmental disabilities with the information, and their families often have to apply to attempt applying
skills, opportunities, and support to— to many different places to find the help they need, and may
• make informed choices and decisions about their lives; encounter long waiting lists for services even after they qualify.

• live in homes and communities in which such individuals can

exercise their full rights and responsibilities as citizens;

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This report focuses on how adults with ASD use DD services. It may be more accurate to think of ‘DD services’ as ‘services
Increasing numbers of individuals identified with ASD are using funded through state DD agencies’, for several reasons. Many of
state DD services,[8] but we know precious little about their the services people get are not designed specifically for people with
experiences. DDs. For instance, DD agencies fund services (e.g., vocational,
mental health, transportation) which can also be provided to
There is no official tally of how many adults with ASD get services people who have severe mental illness, substance abuse, or other
from state DD agencies. Of the estimated 1.4 million individuals conditions that are not DDs. Services funded through DD
known to or served by state DD agencies in 2014, roughly 1.2 agencies are often also provided by other non-DD agencies.
million were receiving at least one long-term support service from Many DD services are funded with federal/state DD dollars but
a state DD agency, and 840,000 were age 22 or older.[9] Using are provided by local nonprofit agencies. Finally, there are many
these figures and data from the National Core Indicators - Adult streams of funding that merge into DD services (e.g., Medicaid,
Consumer Survey (ACS), we estimated that 111,400 working- state general revenue, local funding). Despite the varied streams of
aged adults (18 to 64 years) with ASD nationwide received funding, services are still collectively referred to as DD services.
services and/or funding through state DD agencies in 2014.
This estimated number likely does not come close to the overall It is critical to understand that states are given flexibility to decide
number of people who need services. People with ASD who do what services they provide, how the services are defined, who is
not also have an intellectual disability (ID) may not qualify for eligible for services, how data about these services are collected
DD services in some states. Other states have long wait lists which and reported, and how services are funded. Because each state
preclude access to DD services. Nearly 317,000 people with I/DD administers their DD services differently, the system of state DD
were on state waiting lists for Medicaid Home and Community services is varied and complex.[9] These services, and the ways in
Based Services (HCBS) waivers alone in 2014,[10] and Medicaid which they are provided, have changed dramatically over time -
waivers are a primary funder of DD services. moving toward more community-based and consumer-directed
approaches with attention to person-centered planning and
fostering self-determination.

Developmental Disability
Services at a glance
What are DD services?
State DD services aim to improve well-being and participation in
the community. Services might be provided directly through local
governmental DD offices or by contracted nonprofit organizations,
private businesses, and others.

Most state DD agencies offer employment supports, respite,

transportation, and residential supports. The names of the services
may vary depending on where one lives, and services with similar
names may look very different across states. For example, in some
states family support services might consist of small cash supports
for families to pay for respite providers, while in others it might
include funding for round-the-clock, in-home care.[9] For more
information on DD services, see the Use and Coordination of
DD Services chapter.

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 DD services look different in every state.

1 State DD agencies are embedded in various divisions or departments

across states. Most services are administered through local government
or nonprofit offices.

2 Eligibility criteria differs across states. Some states limit their DD services
to people with intellectual disability (ID), and others include people with
related conditions like autism - even if they don’t have an ID.

3 Each state decides what services are available under the DD program.
The names of the services may vary depending on where one lives, and
services with similar names may look very different across states.

4 Funding for state DD programs is a complicated mixture of state and federal

sources and looks different in each state. The two main sources of DD funds
for states are Medicaid HCBS funds and state general revenue.(7)

5 States vary in the proportion of funding they direct toward community-based

versus facility-based services.

6
There is no single source of regulation and oversight of DD services at the
federal level. Guidance for state DD systems comes from DD State Plans,
Medicaid HCBS waiver regulations, legislation and Department of Justice
rulings, and various advisory bodies such as the DD state councils.

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How are DD services funded? • Medicaid Intermediate Care Facilities for Individuals with
Intellectual Disabilities (ICF/ID) funding is a Medicaid
State DD agencies combine federal and state dollars to fund program that primarily allows provision of services to people
services for people with I/DD. However, in many states, Medicaid with I/DD in state-run residential facilities. This is generally the
funds the majority of services provided to children and adults with most restrictive type of residential care and is reserved for those
DD. In FY 2013, 78% of spending on services for children and who need active treatment, which means the individual requires
adults with I/DD came from federal and state Medicaid funds for constant attention and has limited independence. In contrast
Long Term Services and Supports (LTSS) - ranging from 55% to to HCBS programs, ICF/ID programs have no waiting list and
91% across states.[11] An additional 12% came from other state states are not allowed to restrict enrollment. ICF/ID funding
funds and 10% from other federal funds. The bulk (66%) of these preceded HCBS waivers, and the use of this type of funding
Medicaid funds came from Home and Community Based Services has been decreasing as the use of HCBS waivers has increased.
(HCBS) waivers, 27% from ICF/ID funding (read more below), In 2014, 6% of people with IDD known to state DD agencies
and 7% from other Medicaid related funds. In other words, some had ICF/ID funding.[13] The cost of provision of services
states fund almost all of their DD services through Medicaid under ICF/ID is much higher than through HCBS waivers.
waivers with the exception of family-directed services like respite The average annual per person expenditures for ICF/ID was 3.1
and family supports. In some states, the DD agency is actually times higher ($133,582 average per recipient) than for HCBS
part of the state Medicaid agency.[12] and other Medicaid waiver recipients ($43,154 average per
recipient).[13]
• Medicaid Home and Community Based Services (HCBS)
waivers are used to fund LTSS for people with I/DD who live
and function in community-based settings. In 2014, 53% of
the people with IDD known to state DD agencies received
funding from an HCBS or other Medicaid Waiver (including
demonstration projects and managed care waivers).[13] States
vary in which types of HCBS waivers they utilize and eligibility
criteria to qualify for this funding. A few states have autism-
specific waivers in place for adults.

Most spending for DD services in 2013 was funded through federal and state
Medicaid dollars. The majority were funded through HCBS waivers.

78% of spending on
services for 66% Most Medicaid
funding is
people with I/DD 27% HCBS through HCBS
came from ICF/ID Waiver waivers.
About one-
federal and state fourth is
Medicaid funds. through
ICF/ID funds.

Adapted from Source: Broddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2015.

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Historical context Considerations about DD
services data in this report
The provision of state DD services has been influenced by a variety
of federal legislation and judicial rulings, including:
• The Developmental Disabilities Assistance and Bill of What is the purpose of the Adult
Rights Act of 2000 (DD Act) (PL 106-402), commonly Consumer Survey (ACS)?
referred to as “the DD Act”, authorizes funds to assure that
individuals with developmental disabilities and their families States use the ACS to track the quality of their public services
“have access to needed community services, individualized for adults with I/DD. Key indicators can be used to compare
supports, and other forms of assistance that promote self- performance of DD service systems across states. Topics that fall
determination, independence, productivity, and integration outside of the DD service system - like postsecondary education
and inclusion in all facets of community life.”[5] The DD - are not included. We were unable to examine how services
Act set up mechanisms for guiding systems change efforts, and outcomes were related to household income as this was
protecting and advocating for individuals’ rights, conducting not measured in the survey. Read more about the survey in the
research and training, providing technical assistance, and Methods chapter.
funding national data collection initiatives about DD services.
How was the ACS data collected?
• In 1999, the U.S. Supreme Court’s “Olmstead Decision” The information from the ACS is collected in three parts:
ruled on a portion of the Americans with Disabilities • Background section - Information gathered from state
Act (ADA) of 1990 and clarified that public entities must records by a survey administrator who did not know the
provide community-based services to persons with disabilities participant. Example topics include health and mental
when the services are appropriate, the persons involved history, where the person lives, recent employment history,
do not oppose community-based treatment, and when and services received.
community-based services can be reasonably accommodated. • Section I - A series of subjective questions about satisfaction
[14] Some states have an Olmstead Plan to help them meet levels or personal experiences that can only be completed by
these standards of integration. The Department of Justice the adult service user in a face-to-face interview. Example
(DOJ) enforces the Olmstead Decision, especially as it topics include satisfaction with one’s employment and living
applies to housing, home and community based services, arrangement, and safety.
and employment. Testimony by a DOJ official in 2012 • Section II - A combination of objective and subjective
summarized the continued importance of Olmstead by saying questions completed by the adult service user if possible, or a
that people with DDs should have: proxy respondent if the individual was unable to participate
Opportunities to live life like people without disabilities; on their own. Example topics include access to needed
Opportunities for true integration, independence, services, how the person spends their leisure time, and
recovery, choice and self-determination in all aspects of opportunities to make choices in one’s life.
life including where they live, spend their days, work, or
participate in their community; and
Quality services that meet their individual needs.[15]
What is a proxy?
Some individuals were unable to understand and
answer survey questions independently. In this case,
a proxy respondent was allowed to answer questions
for the individual (except for the questions in Section
I about satisfaction and personal experiences). A
proxy is a person who knows the person well, such
as a family member, friend, staff person, guardian
or advocate. Service coordinators or case managers
were not allowed to serve as a proxy. Proxies answered
questions face-to-face or by the phone (as a last resort).

20 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
About self-respondents References

Half (50%) of the individuals with ASD self-reported information 1. Roux AM, Shattuck PT, Rast JE, Rava JA, and Anderson KA.
(2015). National Autism Indicators Report: Transition into Young
about their personal experiences. We refer to this group as
Adulthood. Philadelphia, PA: Life Course Outcomes Research
self-respondents throughout this report in sections marked In
Program, A.J. Drexel Autism Institute, Drexel University.
Their Own Voices. We found that, on average, people who
2. Shattuck PT, Wagner M, Narendorf S, Sterzing P, and Hensley
self-reported survey answers had less intellectual impairment and
M. (2016). Post-high school service use among young adults with
were more likely to use spoken language than those who were
an autism spectrum disorder. Archives of Pediatric and Adolescent
not able to report answers for themselves. However, some adults Medicine: 165(2), 141-146.
with severe and profound intellectual disability did self-report
3. Turcotte P, Mathew M, Shea LL, Brusilovskiy, and Nonnemacher
responses. Note: We did not analyze self-reported information
SL. (2016). Service needs across the lifespan for individuals with
if the interviewer indicated that a person was unreliable in autism. Journal of Autism and Developmental Disorders: 46(7), 2480-
understanding or answering survey questions. 2489.
4. Shattuck PT, Roux AM, Hudson LE, Taylor JL, Maenner MJ, and
Trani J. (2012). Services for adults with an autism spectrum disorder.
Canadian Journal of Psychiatry: 57(5), 284-291.
People with I/DD want to be heard. 5. DD Act, section 101, 42 U.S.C. 15001 (b) (2006)
While self-report measures are never flawless, they are 6. Roux AM, Rast JE, Anderson KA, and Shattuck PT. (2016).
an important attempt at measuring the opinions and National Autism Indicators Report: Vocational Rehabilitation.
satisfaction levels of people whose quality of life may Philadelphia, PA: Life Course Outcomes Research Program, A.J.
Drexel Autism Institute, Drexel University.
be related to the services they receive. Results may be
influenced by who asked the questions, how they were 7. Butterworth J, Smith FA, Winsor J, Ciulla Timmons J, Migliore
asked, who else was in the room, and how well the A, and Domin D. (2016). StateData: The national report on
employment services and outcomes. Boston, MA: University of
person understood. Despite these concerns, we present
Massachusetts Boston, Institute for Community Inclusion.
self-responses for people who reportedly understood
the questions and gave consistent responses (per the 8. Hiersteiner D, Bradley V, Ne’eman A, Bershadsky J, and Bonardi
A. (2017). Putting the research in context: The life experience and
surveyor), to honor their voices. Half of the individuals
outcomes of adults on the autism spectrum receiving services in 29
with ASD in the ACS self-reported information about
states. Inclusion: 5(1), 45-59.
their personal experiences.
9. Anderson, L.L., Larson, S.A., Kardell, Y., Taylor, B., Hallas-Muchow,
L., Eschenbacher, H.J., Hewitt, A.S, Sowers, M, & Bourne, M.L.
(2016). Supporting Individuals with Intellectual or Developmental
Disabilities and their Families: Status and Trends through 2014.
In general, while self-reported data offers highly valuable insights Minneapolis: University of Minnesota, Research and Training Center
about DD service users who have ASD, we caution that: 1) self- on Community Living, Institute on Community Integration.
reporters represent only a subset of people on the autism spectrum 10. Bragdon T. (2014). The Case for Inclusion 2014. Washington DC:
who used DD services, and who were able to communicate for United Cerebral Palsy.
themselves, and 2) caution should be used when interpreting data 11. Braddock, D. L., Hemp, R. E., Rizzolo, M. C., Tanis, E. S.,
that is reportedly from persons with severe and profound ID. For Haffer, L., & Wu, J. (2015). State of the States in Intellectual and
more information on self-respondents, see the Characteristics Developmental Disabilities (Vol. 308). Washington, DC: American
chapter. Association on Intellectual and Developmental Disabilities.
12. Medicaid and CHIP Payment and Access Commission (MACPAC).
(June 2014). Report to the congress on medicaid and CHIP. Chapter
2: Medicaid’s role in providing assistance with long-term services and
supports. Accessed at www.macpac.gov
13. Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B.,
Pettingell, S., Hewitt, A., Sowers, M., & Fay, M.L. (2017). In-home
and residential long-term supports and services for persons with
intellectual or developmental disabilities: Status and trends through
2014. Minneapolis: University of Minnesota, Research and Training
Center on Community Living, Institute on Community Integration.
Access at https://risp.umn.edu/publications
14. Olmstead v L.C., 527 U.S. at 607, www.ada.gov
15. Assistant Atty General for Civil Rights, Thomas E Perez, Testimony
to the U.S. Senate Committee on Health, Education, Labor and
Pensions. Washington DC, June 21 2012. Retrieved from www.
justice.gov

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22 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
Characteristics

Adults with ASD who use Most ACS participants with ASD were male,
white, and primarily used English.
state Developmental Disability
services. Male 74%

White 66%

Our key findings Black 16%

• The average age of adults with autism spectrum disorder Other race(s) 18%
(ASD) who participated in the survey was 34 years -
eight years younger than DD service users who did not Hispanic 12%
have ASD.
English as
• Half (51%) of middle-aged adults (45-64 years) with 94%
primary language
ASD had severe or profound intellectual disability Percentage of adults with ASD
(ID), compared to only 16% of young adults (18-24
years) with ASD. Source: NCI Adult Consumer Survey 2014-15

• In some states all adults with ASD also had ID, while in
other states approximately half had ID - likely reflecting
differences in state policy about who qualifies for DD
services.
• Younger adults with ASD were more likely to use Adults with ASD used DD services
spoken language as their primary means of expression across their working years.
than middle-aged adults with ASD.

Percentage of adults with ASD

A total of 3,520 adults with ASD who were ages 18-64 and not
in public school participated in the 2014-2015 Adult Consumer
Survey (ACS). If an adult with ASD did not want to respond to 33%
the survey or was unable to respond, a proxy who knew them 23% 23%
well could respond to a portion of the survey on their behalf. 21%
For more information on who is included in these analyses, see
the Methods appendix.

Demographic characteristics 18-24 25-29 30-44 45-64

Age
Adults with ASD in this report
averaged 34 years of age at the Throughout Source: NCI Adult Consumer Survey 2014-15
time of the ACS 2014-2015 this report, we
survey. While more people were frequently refer to
younger adults
between 30-44 years, participant (18-24 years)
ages were fairly evenly distributed versus middle-
across the working years (18-64 aged adults
years). Most were male, white, and (45-64 years), as
non-Hispanic. In comparison, the there tend to be
differences in their
composition of the U.S. population outcomes.
in 2015 was female (51%), White
(77%), Black (13%), Hispanic
(18%), who used English as a primary language at home (79%).
[1] Participants with ASD in the ACS were more likely to use
English as a primary language.

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 Impairment characteristics Older adults with ASD were more likely to
Intellectual Disability (ID). The proportion of youth with have severe or profound ID than younger
ASD who also have ID has generally decreased since 2002, and adults with ASD.
is currently estimated at around 30% of children with ASD. Level of ID
No ID Mild ID Moderate ID Severe ID Profound ID
[2] The group of people with ASD who receive DD services,
however, tend to have a much higher rate of ID. The findings
in this report represent people with a greater level of functional 18-24 32% 28% 25% 12% 4%
impairments than the overall population of individuals with
ASD.

Age range (years)

25-29 21% 29% 26% 19% 5%
ACS surveyors were asked “Does this person have an intellectual
disability? If yes, what level?” Based on state records, about 80%
of ACS participants with ASD reportedly also had ID, which
refers to having significant deficits in intellectual and adaptive 30-44 17% 26% 27% 19% 11%
functioning that began in childhood. Impairments in intellectual
functioning are generally defined using a person’s IQ score and
classified as mild (IQ 50-70), moderate (IQ 40-55) severe (IQ
25-40) or profound (IQ less than 25). Adaptive functioning 45-64 8% 20% 21% 26% 26%
refers to things such as how a person manages activities of daily
living like dressing, cooking, and getting around.[3] Source: NCI Adult Consumer Survey 2014-15

Intellectual Disability rates

vary by age. Over half of Later, we report that
those with ASD under the there are significant Communication abilities. ACS surveyors used state records to
age of 30 had no or mild ID, differences in the rates answer, “What is this person’s primary means of expression?”
of many outcomes We organized the answers into spoken versus nonverbal
compared to 28% of people
when broken out by age
over the age of 45. Over half groups. It is important to
communication (gestures/body language, sign language or
of middle-aged adults (45-64 remember that the rate finger spelling, communication aid/device, or other). Spoken
years) had severe or profound of ID varies by age. language was the primary means of expression for 64% of survey
ID, compared to 16% in the Differences in outcomes participants with ASD. Younger adults reported spoken language
across age groups might as their primary means of expression more often than middle-
youngest age group (18-24
simply reflect the fact that
years). older individuals in this
aged adults.
survey were more likely to
have ID. Use of nonverbal communication was more common in people
with moderate to profound ID. It is important to remember
that communication abilities and ID are highly correlated.
People who cannot use spoken language are more likely to
have higher levels of ID; although this is not always the case.
Some people cannot speak but do have average to above average
intelligence and may rely on electronic communication devices
for communication.

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 Younger adults with ASD were more likely Adults with ASD who primarily used
to use spoken language as their primary spoken language were less likely to have
means of expression. an ID than adults who primarily used
nonverbal expression.
18-24 71%
Level of ID
no ID mild ID moderate ID severe ID profound ID

Primary means of expression

25-29 69%
Spoken
Age

26% 36% 26% 10% 2%

language
30-44 62%

45-64 54% Nonverbal

communication 9% 7% 23% 35% 26%
Percentage of adults with ASD who used spoken
language as their primary means of expression
Source: NCI Adult Consumer Survey 2014-15
Source: NCI Adult Consumer Survey 2014-15

What percentage of DD service users in states had ASD?

MEORC
Washington
DC

6-12%
Percentage
of DD 12-15%
service users
15-18%
in the state
18-24%

Did not participate in the ACS

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 Characteristics of self-respondents Self-respondents with ASD were unlikely to
Half of participants with ASD answered some or all questions have severe or profound ID.
in the ACS for themselves. More young adults participated Level of ID
independently compared to middle-aged adults. This may have No ID Mild ID Moderate ID Severe ID Profound ID
been related to their abilities, as middle-aged participants were
more likely to have ID. 18-24 40% 36% 19% 1%

Younger adults with ASD were more likely

Age range (years)

to self-respond to questions than middle- 25-29 27% 43% 24% 0%
aged adults.

18-24 58% 30-44 27% 40% 26% 3%

25-29 53%
Age

45-64 17% 42% 23% 11% 7%

30-44 50%
Source: NCI Adult Consumer Survey 2014-15
45-64 38%
Percentage of adults with ASD who were
self-respondents Some states had a higher percentage of
adults with ASD with intellectual disability
Source: NCI Adult Consumer Survey 2014-15
The percentage of working-aged adults with ASD who also
had ID varied across participating states. Four states and
There were no differences in sex, race or and ethnicity for those
Washington, D.C. reported 100% of their survey participants
who self-responded to survey questions compared to those who
had ID, while Vermont and South Carolina reported that only
were unable to participate on their own. Self-respondents more
57% of their participants with ASD had an ID. This finding
often had no ID, or mild to moderate ID, compared to those
likely reflects differences in state policy regarding who can access
who were unable to participate in the survey independently. The
DD services. In some states, people without an ID are less
vast majority (90%) of self-respondents used spoken language
likely to qualify as eligible for support even though they may
as their primary means of communication, compared to 39% of
be developmentally disabled or experience a high level of
those who needed a proxy.
impairment related to their autism spectrum condition.

Characteristics of other DD service users

Throughout this report, we compare the experiences of adults with
Adults with ASD were less likely to have
ASD with other adults who used DD services. The average DD an intellectual disability (ID) than other
service user (who did not have ASD) was 42 years old - eight years DD service users.
older than the average DD service user with ASD. Most adults
Level of ID
with ASD were male, compared to half (54%) of other adult DD
No ID Mild ID Moderate ID Severe ID Profound ID
service users. Racial and ethnic distribution was similar between
the two groups, as was the use of English as a primary language.
DD service users who did not have ASD were more likely to use Adults with
ASD
20% 26% 25% 19% 11%
spoken language as their primary means of expression (76%),
compared to 64% of adults with ASD in the ACS.

All other
DD service 7% 40% 29% 13% 11%
users

Source: NCI Adult Consumer Survey 2014-15

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States differed in the percentage of adults with ASD in the ACS who also had
an intellectual disability (ID).

MEORC
Washington
DC

57-79%
Percentage 80-89%
of adults with
autism in the 90-99%
state
100%

Did not participate in the ACS

References
1. US Census Bureau, Quick Facts, July 1, 2015.
https://www.census.gov/quickfacts/table/PST045216/00
2. Christensen DL, Baio J, Braun KV, et al. Prevalence and
Characteristics of Autism Spectrum Disorder Among Children
Aged 8 Years — Autism and Developmental Disabilities Monitoring
Network, 11 Sites, United States, 2012. MMWR Surveill Summ
2016;65(No. SS-3)(No. SS-3):1–23.
3. Schalock, R & Luckasson R. (2015). A systematic approach to
subgroup classification in intellectual disability. Intellectual and
Developmental Disabilities: 53(5), 358-366.

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Use of DD Services

What types of services were included in

Half used at least six services
the survey?
funded by a DD agency. The services shown in the graphs below include only the services
asked about in the ACS. There are many additional services
adults with ASD might need including behavioral supports,
Our key findings personal care supports, services to support day activities other
than employment, and services to help people self-direct their
• Of the services that the Adult Consumer Survey (ACS) care. You can read more about DD services in the Background
asked about, the most common services adults with chapter.
autism spectrum disorder (ASD) received were health
care, dental care, and transportation. About half of
adults with ASD received information about benefits or
insurance (54%), and services for social relationships or Which DD services did adults with ASD
meeting people (49%). receive?
• Almost half (49%) of adults with ASD used six The question, “Which of the following services/supports funded
or more services funded by a state developmental by the state (or county) agency does this person receive?”
disability (DD) agency. Those with ASD used the was answered using state records based on a list of potential
same types of DD services, and at the same rate, as services. Nearly all ACS participants with ASD received service
other DD service users who did not have ASD. coordination, and most used health care services. Over two-
• Half (51%) of adults with ASD who lived with parents thirds of participants used dental services and transportation
or relatives received respite care services. Younger services. About half of participants with ASD received
participants with ASD (18-24 years) were more likely information about benefits or insurance, and services for social
to receive respite care than middle-aged individuals (45- relationships or meeting people. One-third received educational
64 years). or training services, respite or family support services, or
• Overall, 25% of ACS participants with ASD reported residential services. Overall, about one-fourth received
that they did not receive all of the services they employment services to help them find, maintain, or change
needed. jobs. Adults with ASD used the same types of DD services, at the
same rate, as other DD service users who did not have ASD.

Why DD Services matter

In our 2015 National Autism Indicators Report: Transition into
Young Adulthood we told you about the “services cliff” - the
drop-off in services that some youth experience after high school
when they lose access to the services that they may have had
through special education. Even if they had state DD services
during childhood, they may need to requalify for help as adults
upon reaching a specified age (18 in many states) and could
encounter lengthy wait lists for services. Funding sources for
supports in adulthood, such as the Medicaid waivers that often
fund DD services, also require qualification.

The needs of adults with ASD vary widely across the spectrum.
Those who qualify for state DD services tend to have higher
levels of cognitive and functional impairments. They may also
have different needs than their peers with other types of DDs.
This chapter examines the experiences of adults with ASD who
use DD services and explores how their service use compares to
other DD service users.

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 Adults with ASD received services at about On average, adults with ASD received six services that were
the same rates as other DD service users. funded by state or county agencies from a list of 13 services
(including an “other” category) asked about in the ACS. Most
Service 97% (89%) adults with ASD received three or more services that
coordination were funded through the state (or county) agency; half (49%)
had at least six. This was the same in all other DD service users.
81%
Health care
The use of most services was
73% higher among middle-aged It is important to
Dental care individuals (45-64 years) with remember that the
the exception of respite services. rate of ID varies
by age. Differences
66% Younger participants (18-24 years) in outcomes across
Transportation were more likely to receive respite age groups might
care than middle-aged individuals. simply reflect the fact
Benefits/ Middle-aged participants were older individuals in
54% this survey were more
insurance more likely to receive services
likely to have ID.
information for health care, dental care,
Social/ transportation, benefits and
49%
relationships/ insurance information, residential services (to find, maintain,
meeting people or change housing), and environmental adaptations/home
modifications than younger adults.
Education or 38%
training

Residential 33%
services What are home modifications and
26% environmental adaptations?
Employment
services Home modifications and environmental adaptations
are changes that enable an individual to live safely
Environmental 13% and successfully within their home environment.
adapation/ home
modifications Examples of modifications and adaptations for
a person with ASD include creation of a private
Communication 13% bedroom, a safe space, security or tracking devices
technology to prevent wandering, or tools to support organization
of the home environment to support independence.
12%
Other services

Percentage of adults who used the service

Source: NCI Adult Consumer Survey 2014-15

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 Middle-aged adults with ASD were more likely to use many services than younger adults.
Health care Dental care Transportation

18-24 18-24 18-24

75% 66% 54%

Age

Age
Age

45-64 87% 45-64 81% 45-64 77%

Benefits information Residential Services Home modifications

18-24 18-24
48% 23% 18-24 10%
Age

Age
Age

45-64 62% 45-64 43% 45-64 23%

Source: NCI Adult Consumer Survey 2014-15

SPOTLIGHT: Receipt of respite care was more common

for younger adults with ASD.
Respite care
We examined the use of respite care services for caregivers of 18-24 56%
adults with ASD who lived in the home of a parent or relative.
Just over half (51%) of adults with ASD who lived in the home
of a parent or relative received respite care. This varied by age, 25-29 49%
and more young adults with ASD used this service than middle-
Age

aged adults with ASD.

30-44 50%

45-64 45%
What are respite services?
Percentage of adults with ASD who
Respite is a type of family support service which received respite services
provides temporary relief for caregivers, offering a Source: NCI Adult Consumer Survey 2014-15
break from usual care duties to help relieve stress.
Respite services might be provided inside or outside
one’s home, and could be a planned break from care
or assistance given during an emergency.

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 Service needs
ACS participants were asked, “Do you get all the services you
Potential sources of bias in survey
need?” Proxy respondents could also answer this question (“Does responses about services, satisfaction
this person get the services and supports s/he needs?”). Those and choice
who responded with no, sometimes, or not enough were considered
to have unmet service needs. If additional services were needed, Responses to questions about satisfaction with
people indicated which services were needed from a given list. services and staff might be influenced by who
People could also write in other types of needed services. Three answered the survey questions (e.g., an adult with
out of four (75%) participants with ASD reportedly received ASD versus a proxy) and what these individuals were
all the services they needed. thinking when they answered the questions. Findings
might be influenced in the following ways:
Whether the person received needed services did not vary by • A participant might give a more positive response
race or ethnicity, but did vary by age. A higher percentage of to please the interviewer or to avoid displeasing
middle-aged adults reportedly received the services they needed staff who deliver their services. This issue of
compared to younger adults. There were no differences in “socially desirable” responses is well known in DD
receiving needed services based on whether the person used research.[1]
spoken language or not. • People who were dissatisfied with particular
services may have discontinued them by the time
Those with ASD who had no ID were less likely to get the of the survey. So, there might have been fewer
services they needed compared to adults who had ASD and ID. dissatisfied service users who participated in the
Adults with ASD were just as likely to receive needed services ACS. This could lead to an underestimation of
compared to other DD service users. service dissatisfaction.
• People who report not needing additional services
or having all their service needs met might not be
fully aware of services they could access which
might be beneficial in helping them reach their
desired outcomes.
• We don’t know whether people truly had choices
of service providers. It is impossible to know
how many people actually knew it was possible
to change their staff if necessary, or how many
people would have felt empowered to ask to
change staff.

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 Young adults with ASD were less likely to Overall, 25% of ACS participants with ASD reportedly
receive the services they felt they needed. did not receive all, or enough of, the services they needed.
Respondents who said no or sometimes, or doesn’t get enough of the
services needed were considered to not receive all of the serviced
18-24 67% needed. The most commonly reported unmet service needs were
education or training, socialization and relationships, respite
care, family supports, and job assistance. Types and rates of
25-29 70% needed services were similar between people with ASD compared
Age

to other DD services users.

30-44 77% Young adults more often needed education or training services
(30% of adults age 18-24 and 39% of adults age 25-29),
compared to 19% of middle-aged participants. While 33%
45-64 86% of young adults felt they needed services for relationships and
meeting people only 18% of middle-aged adults reportedly
Percentage of adults with ASD who received
needed services
needed this. Younger adults were more likely to report needing
service coordination (10% of younger adults ages 18-24 and
Source: NCI Adult Consumer Survey 2014-15
19% of younger adults ages 24-29 years) compared to 2% of
middle-aged adults. We note that while 96% of adults with
ASD were reported to have service coordination, the 12% who
indicated a need for service coordination might not have known
It was less common for adults with ASD that they had a service coordinator (or case manager), or may
have felt they needed additional service coordination.
with no ID to get the services they needed.

No ID 65%

Mild 76%
Level of ID

Moderate 77%

Severe/
profound 79%
Percentage of adults with ASD who got
needed services

Source: NCI Adult Consumer Survey 2014-15

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 Adults with ASD had higher rates of unmet Unmet needs in the Other Services category were strikingly
higher for those with ASD. When asked about the Other Services
service needs than other DD service users.
they needed, participants (or their proxies) most commonly
mentioned: Speech/Occupational/Physical or other therapies;
Education or 30% direct care staff and more hours of direct care; more available
training staff and providers in the community; day programs, funding
for day programs, and more day programming hours; behavior
Social/ 28% supports, analysis, and services; and recreation, activities, and
relationships/ opportunities for socialization. Additional needs included:
meeting people financial supports for individuals and their caregivers; daily living
Employment 24% skills; transportation; housing options and funding for housing;
services employment supports and job opportunities; in-home supports
and funding for in-home supports; information on services and
21% referrals to providers; and exercise and weight management.
Dental care
Among those adults with ASD who lived in the home of a parent
or relative and reported a need for additional services, 33%
20%
Transportation reported a need for respite services. This varied little by age.

Communication 17%
technology
In their own voices
Residential 12% Self-respondents were able to answer questions about
services services using yes, maybe, or not sure. Similarly, some
questions allowed for responses of sometimes. For
Service 12% this In Their Own Voices section, those who answered
coordination maybe or sometimes were included as responding yes.

11%
Health care
People with I/DD want to be heard. While
self-report measures are never flawless, they are
an important attempt at measuring the opinions
Benefits/ 9% and satisfaction levels of people whose quality of
insurance
life may be related to the services they receive.
information
Results may be influenced by who asked the
Home 8% questions, how they were asked, who else was in
the room, and how well the person understood.
modifications Despite these concerns, we present self-
responses for people who reportedly understood
40% the questions and gave consistent responses
Other services (per the surveyor), to honor their voices. Half of
the individuals with ASD in the ACS self-reported
Percentage of adults who needed information about their personal experiences.
additional services

Source: NCI Adult Consumer Survey 2014-15

Experiences with service provision
Self-respondents with ASD expressed overall positive
experiences with service provision. Almost all
participants reported that they had a service plan
(97%), and 94% reported helping make it. A service
plan is the document that specifies individualized goals
to be achieved through the services that are provided.

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Service choices Over half (57%) of ACS participants with ASD (or their proxies)
felt their staff had the right training to meet their needs, while
Surveyors asked ASD participants (or their proxies), “Did you 40% indicated uncertainty and 3% explicitly said no. There were
choose or pick your case manager/service coordinator?” (or “Did few differences in choice-making across age groups.
this person choose his/her case manager/service coordinator?”)
and “Did you choose (or pick) your staff?” (or “Did this person
choose his/her staff?”) It was very uncommon for adults with
ASD to choose their own case manager/service coordinator or
Self-directed supports
their own staff. A little over half said that their case manager or Some DD service users who participate in Medicaid waivers
staff was assigned but could be changed if requested. choose to self-direct their supports, defined in the ACS as “the
opportunity to manage some or all of their services” including
hiring/firing support workers and controlling how their budget
is spent. The availability of this option varies across states. Self-
Most adults with ASD did not choose direction is often done with the support of family members to
their case manager, but over half could hire, supervise, and pay providers.
change their case manager if needed.
Using background records, surveyors answered whether the

Percentage of adults with ASD

person was currently using self-directed supports. Overall, 13%
of survey participants with ASD used self-directed supports -
60% most commonly among younger participants. Of those who used
self-directed supports, 35% were their own legal guardians; while
32% 59% had a full guardian, and 6% had a limited guardian (See
Independence and Rights chapter.)
8%
Using background records, the surveyor reported who employed
the person’s support workers. More than half of those who were
Yes No, but could be No self-directing their supports (63%) employed their own workers.
changed
Person chose their own case manager There were no significant differences in how often adults
Source: NCI Adult Consumer Survey 2014-15 with ASD self-directed their services compared to other DD
service users. Rates of use of self-directed supports were no
different in those who used spoken language versus nonverbal
communication, and also did not vary based on race or ethnicity.
Younger adults with ASD were more likely to self-direct services,
Most adults with ASD did not choose perhaps reflecting the contemporary push for self-direction.
Note: There was no information about the use of self-directed
their staff, but about half could change supports for participants from the state of California.
staff if needed.
Percentage of adults with ASD

What are self-directed supports?

50%
Adults with DDs, or their legal representatives, who
37%
self-direct their supports have decision-making
authority over certain services and take direct
14% responsibility to manage their services with some
assistance, within a person-centered planning
process. For example, participants are allowed to
Yes No, but could be No
changed
recruit, hire, train and supervise individuals to provide
services. The self-directed service delivery model is
Person chose their own staff
an alternative to traditionally delivered and managed
Source: NCI Adult Consumer Survey 2014-15 services, such as an agency delivery model.
Source: Centers for Medicare and Medicaid Services, www.
medicaid.gov/medicaid/ltss/self-directed

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 Younger adults with ASD were more Funding for services in the community
likely to use self-directed supports. Funding information was collected differently across states
(see Methods). Of the 29 states (plus Washington, D.C.
18-24 20% and the Mid-East Ohio Regional Council) that reported this
information, 93% of ACS participants with ASD received some
type of Medicaid funding - either Home and Community Based
Services (HCBS) waivers or Intermediate Care Facility for the
25-29 16%
Intellectually Disabled (ICF/ID) funding. The most common
Age

type of funding came from Medicaid Home and Community

Based Services (HCBS) waivers, with nearly half of participants
30-44 11% receiving this type of funding (48%). Recall that HCBS waivers
are primarily used to meet the needs of people who receive long-
term services and supports in their home or community versus
45-64 4% in an institutional setting. For more information on funding, see
Percentage of adults with ASD who used the Background chapter.
self-directed supports
Source: NCI Adult Consumer Survey 2014-15

Looking Ahead
Adults with ASD who did not have ID were Please refer to the Looking Ahead chapter for discussion of
most likely to use self-directed supports. research gaps and next steps for learning more about Health and
Health Care and other topics.

No ID 20%
Reference

Mild 1. Heal, LW, and Sigelman CK. (1995). Response Biases in Interviews
12%
Level of ID

of Individuals with Limited Mental Ability. Journal of Intellectual

Disability Research 39(4): 331-340.
Moderate
13%

Severe/
profound
10%
Percent of adults with ASD who used self-
directed supports

Source: NCI Adult Consumer Survey 2014-15

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Health and Health Care

Half had at least one health Special note: Almost all data on health conditions and health
care in the 2014-15 Adult Consumer Survey (ACS) came from
condition in addition to ASD. background information in state records. The only information on
health reported by survey participants with ASD or their proxies
was a question about overall health. Caution should be used in
Our key findings interpreting the data in this chapter, as some health information
may not have been recorded in state records. We can also only
• Half (51%) of adults with autism spectrum disorder report on conditions that were asked about in the survey.
(ASD) had at least one health condition in addition
to ASD from a list of 11 conditions. Information about other health conditions, such as
• More than half (58%) of adults with ASD had a Body gastrointestinal problems, that are common in those with ASD,
Mass Index that placed them in the overweight or obese was not collected. There may be a systematic bias in this dataset
category. Those with ASD who had severe or profound toward under-reporting how common health difficulties are.
intellectual disability (ID) or who used nonverbal That said, these statistics still provide important, baseline data
communication were less likely to engage in moderate about health and health care for adults with ASD.
physical activity.
• Most had annual health and dental check-ups, but
vision checks, cancer screenings, and flu vaccination Overall health
were less common for those with ASD than among
ACS participants (or their proxies) were asked “Overall, how
other developmental disability (DD) service users.
would you describe your health?” (or “Overall, how would you
describe this person’s health?”) given a rating scale of excellent,
very good, fairly good, or poor. In contrast to the higher prevalence
of health conditions found in many recent studies of adults with
Why health and health care matter ASD, most who participated in the ACS reportedly had very good
or excellent health. Ratings of overall health did not differ greatly
There is a growing body of knowledge about the health of adults across age groups.
with ASD. Recent studies have found exceptionally high rates
of epilepsy, high cholesterol, hypertension, gastrointestinal
disorders, diabetes, obesity, thyroid disease, inflammatory bowel
disease, sleep disorders, musculoskeletal conditions, nutritional
deficiencies, hearing and vision problems, stroke, Parkinson’s Many adults with ASD were reportedly in
disease, and genetic disorders including Down syndrome, among good health.
others in adults with ASD.[1-4] Adults with ASD are also twice as

Percentage of ACS participants

likely to use the emergency department (ED),[5] are more likely
to be admitted to the hospital from the ED and incur higher costs 52%
of hospitalization,[6] and have more outpatient visits and more
prescription drug use,[4] compared to adults without ASD.

There is also a known need for physician education about ASD 23% 24%
and tools to help them provide care for this adult population.
with ASD

[7-8] Office and hospital visits can be challenging for individuals

with ASD given difficulty adjusting to new environments,
2%
sensory issues with lights and noise, and encounters with
healthcare providers who may be unfamiliar with how to best Poor Fairly good Very good Excellent
interact with people with ASD. These issues may contribute Rated overall health
to higher levels of unmet healthcare needs and lower use of
preventive services reported by adults with ASD.[5] Adults Source: NCI Adult Consumer Survey 2014-15
with ASD also report low levels of satisfaction about their
communication with providers during healthcare visits compared
to adults without ASD.[5]

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Physical health conditions The most common physical health conditions reported in ACS
participants with ASD were high blood pressure (hypertension)
Surveyors used background records to answer, “What health and high cholesterol. These conditions varied by age, with fewer
conditions are noted in this person’s record?” given a list of the young adults (4-5%) reporting high blood pressure or high
following health conditions: cardiovascular disease, diabetes cholesterol than middle-aged adults (25%). Hypertension was
(types 1 and 2), cancer, high blood pressure, high cholesterol, slightly more common among young adults with ASD than in
dysphasia, pressure ulcers, limited or no vision - legally blind, the general population (as reported in the 2012 National Health
hearing loss - severe or profound, Alzheimer’s disease or other Interview Survey), but less common than among middle-aged
dementia, or other (with a write-in response option). adults in the general population who had hypertension.[9] Nine
Half (51%) of adults with ASD had at least one of these listed percent of adults with ASD had limited or no vision. Seven
conditions - lower than the 64% of all other DD service users. percent had diabetes, and 31% had at least one additional health
The rate of having at least one health condition varied by age - condition, including cardiovascular disease, cancer, hearing loss, or
37% among young adults (18-24 years) and 70% in middle-aged others. These rates were not different than other DD service users.
adults (45-64 years).
Other reported health conditions in the records of those with
ASD commonly included: thyroid disorder, gastroesophageal/
acid reflux, constipation, allergies, asthma, obesity, epilepsy,
Health conditions reported in adults with seizure disorder, eczema and other skin conditions, and others.
ASD and all other DD service users.

High blood 14% One-fourth of adults with ASD had seizure

pressure disorder.
About one-fourth (27%) of adults with ASD had a record of a
13% seizure disorder (epilepsy) or neurological problem - about the
High
cholesterol same rate as seen in other DD service users. Seizure disorder was
more common in adults with ASD with severe to profound ID
9% and among those who used nonverbal communication. The rate
Limited or no
of seizure disorder in a broader population sample of adults with
vision
ASD (who were not necessarily getting services funded through a
state DD agency) was 12%.[1]
Diabetes
7%

Seizure disorder and neurological

5%
Hearing loss problems were more likely in adults who
had moderate ID or severe to profound ID.
5%
Dysphasia No ID 15%

Other health 31% Mild 20%

Level of ID

conditions

Source: NCI Adult Consumer Survey 2014-15

Moderate 27%

Severe/
profound 41%
Percentage of adults with ASD with seizure disorder
Source: NCI Adult Consumer Survey 2014-15

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Mobility Far fewer adults with ASD who had severe or profound ID
engaged in regular exercise compared to those with no ID or
ACS surveyors reviewed state records to answer, “How would mild/moderate ID. Those who used nonverbal communication
you describe this person’s mobility?” Most adults with ASD were were also less likely to engage in regular exercise versus those who
reported to move around their environment without assistance. used spoken language.
Adults with ASD were more likely to be able to independently
move around than other DD service users.

Adults with ASD were more likely to move Younger adults with ASD more commonly
around their environment without aids engaged in regular physical activity than
than other DD service users. middle-aged adults.

Moves 91% 18-24 70%

without aids
75%
25-29 66%
Moves with 6%

Age
aids
14% 30-44 61%

Cannot move 3% 45-64 54%

without
assistance 12% Percentage of adults with ASD who routinely
engaged in moderate physical activity
Percentage of adults
Source: NCI Adult Consumer Survey 2014-15 Source: NCI Adult Consumer Survey 2014-15

Health risk behaviors Adults with severe or profound ID were

Tobacco use. Very few adults with less likely to engage in moderate
ASD (2%) smoked or chewed It is important to physical activity.
tobacco. Tobacco use was low remember that the
rate of ID varies
across age groups. Reported rates of by age. Differences No ID 65%
smoking were much lower than the in outcomes across
rate of cigarette smoking in adults age groups might
Level of ID

across age groups in the general simply reflect the Mild 68%
population (19-20%),[9] which fact that older
individuals in this
is consistent with lower rates of survey were more Moderate 70%
smoking and alcohol use reported likely to have ID.
for adults with ASD in a large health
Severe/ 52%
care system.[1]
profound
Percentage of adults with ASD who routinely
Exercise. Surveyors reviewed state records to determine, “Does engaged in moderate physical activity
this person routinely engage in any moderate physical activity?”
which was defined as “an activity that causes some increase in Source: NCI Adults Consumer Survey 2014-15
breathing or heart rate” such as “brisk walking, swimming,
bicycling, cleaning, and gardening.” Two-thirds (63%) of adults
with ASD routinely engaged in moderate physical activity. More
young adults engaged in moderate levels of physical activity,
compared to middle-aged adults.

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 Adults with ASD who used nonverbal Health services
communication were less likely to Reported need for medical care. Very few adults with ASD
participate in regular exercise. reportedly needed medical care more than once a week, and
most needed it less than once a month. The need for medical
care did not vary greatly by age. Need for medical care was not
Primary means of expression

Spoken more frequent in adults with ASD compared to other DD service

language 68% users. Other researchers have found higher rates of unmet health
care needs in samples of adults with ASD who were able to self-
report about their health care use.[5]

Nonverbal
communication 54% Most adults with ASD reportedly needed
medical care less than once a month - the
Percentage of adults with ASD who routinely same as other DD service users.
engaged in moderate physical activity

Source: NCI Adult Consumer Survey 2014-15 Less than 89%

once a

Frequency of medical needs

month
Weight management. More than half of adults with ASD had
a body mass index (BMI) that placed them in the overweight or At least 9%
once a
obese category. (Note: The ACS used weight categories defined
month
by the CDC.) About one- third had a normal BMI, and 6%
were underweight. Rates of being overweight increased with age. At least 2%
Fewer young adults were overweight (26%) compared to 36% once a
of middle-aged adults. Rates were similar to general population week
adults across age groups and weight categories.[9] Percentage of adults

Weight gain is a well-known side effect of some psychotropic Source: NCI Adult Consumer Survey 2014-15
medications used in both children and adults.[10] Maintaining
healthy weight and getting regular exercise are important in
this population, because psychotropic medication use is higher
Primary care doctor. The vast majority of adults with ASD had
among people with ASD (see Mental Health chapter).
a primary care doctor (97%), and this did not vary much by age
group. Adults with ASD were more likely to have a usual place
of health care compared to adults in the general population in
More than half of adults with ASD were which 76% of adults ages 18-44 had a usual place of care, and
overweight or obese. 88% of adults ages 45-64.[9]

Annual health exam. Most (88%) adults with ASD had a health
Percentage of adults with ASD

exam in the previous 12 months. Fewer of those who did not

have ID had an annual health exam, compared to those with
severe/profound ID. Rates of having an annual health exam were
36%
30% 28% fairly similar for those who used spoken language (86%) versus
nonverbal communication (92%).

6%

Underweight Normal Overweight Obese

weight
BMI category

Source: NCI Adult Consumer Survey 2014-15

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 Adults with ASD who did not have ID were Public health insurance. Adults with disabilities automatically
less likely to have an annual exam. qualify for Medicare prior to age 65 IF they have received SSDI
benefits for at least 24 months.[11] Less than half (47%) of
adults with ASD in the ACS received Medicare funding - a lower
No ID 83% rate than other DD service users. These rates were similar across
adults who used spoken versus nonverbal communication. Many
more middle-aged adults received Medicare than younger adults.
Mild 86%
Level of ID

Fewer adults with ASD received Medicare if they did not also
have ID. Note that the ACS did not ask about whether a person
Moderate 89% had Medicaid funding, private insurance, or lack of insurance.

Severe/
93%
profound
Percentage of adults with ASD who had an
annual exam

Source: NCI Adult Consumer Survey 2014-15

Adults with ASD were slightly less likely to

have Medicare funding than other DD
Annual dental and vision checks. Most (81%) adults with
ASD had a dental visit in the previous 12 months, and this was service users.
consistent across age groups. Adults with ASD who received DD
services were more likely to have had a dental visit than adults
in the general population - approximately 60% of whom saw a All other
DD users 57%
dentist within the past year.[9]

Almost half (43%) of those with ASD had a vision screening

within the previous 12 months. Use of annual vision screenings
increased with age (39% of adults ages 18-24, 38% of adults ages
Adults with
25-29, 42% of adults ages 30-44, and 53% of adults ages 45-64).
ASD 47%
Cancer screenings. Recommendations from the U.S. Preventive
Services Task Force state that most women age 18-64 should get Percentage of adults who had Medicare
Pap tests every three years. About half (52%) of the women with
ASD in this study had a Pap test within the three years prior to Source: NCI Adult Consumer Survey 2014-15
the survey. This varied by age (38% of women ages 18-24, 39%
of women ages 30-44, 62% of women ages 24-29, and 62% of
women ages 45-64). Other researchers have found lower odds of
Pap tests in adult females with ASD.[5] Middle-aged adults with ASD were more
likely to have Medicare funding than
The U.S. Preventive Services Task Force recommends that younger adults.
women ages 50-74 get mammograms every two years. Seventy-
four percent of the women with ASD over the age of 50 had a
mammogram in the previous two years.
18-24 27%

Vaccinations. Over two thirds (69%) of those with ASD had 25-29 36%
a flu vaccine in the previous 12 months. Receipt of flu vaccine
Age

increased with age: 58% of adults ages 18-24, 61% of adults ages
25-29, 70% of adults ages 30-44, and 87% of adults ages 45-64. 30-44 50%

45-64 75%
Percentage of adults with ASD with Medicare

Source: NCI Adult Consumer Survey 2014-15

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Looking Ahead
Please refer to the Looking Ahead chapter for discussion of
research gaps and next steps for learning more about Health and
Health Care and other topics.

References
1. Croen LA, Zerbo O, Qian Y, Massolo ML, Rich, S, Sidney S,
and Kripke C. (2015). The health status of adults on the autism
spectrum. Autism 19(7): 814-823.
2. Fortuna RJ, Robinson L, Smith TH, Meccarello J, Bullen B, Nobis
K, and Davidson PW. (2016). Health conditions and functional
status in adults with autism: A cross-sectional evaluation. Journal of
General Internal Medicine 31(1): 77-84.
3. Kohane IS, McMurry, Weber G, MacFadden D, et al. (2012). The
co-morbidity burden of children and young adults with autism
spectrum disorders. Plos One 7(4): e33224.
4. Vohra R, Madhavan S, and Sambamoorthi U. (2016). Comorbidity
prevalence, healthcare utilization, and expenditures of Medicaid
enrolled adults with autism spectrum disorders. Autism, epub.
5. Nicolaidis C, Raymaker D, McDonald K, Dern S, Boisclair WC,
Ashkenazy E, and Baggs A. (2012). Comparison of healthcare
experiences in autistic and non-autistic adults: A cross-sectional
online survey facilitated by an academic-community partnership.
Journal of General Internal Medicine 28(6): 761-9.
6. Vohra R, Madhavan S, and Sambamoorthi U. Emergency
department use among adults with autism spectrum disorders
(ASD). Journal of Autism and Developmental Disorders 46(4):
1441-1454.
7. Bruder MB, Kerins G, Mazzarella C, Sims J, and Stein N. (2012).
The medical care of adults with autism spectrum disorders:
Identifying the needs. Journal of Autism and Developmental Disorders
42: 2498-2504.
8. Zerbo O, Massolo ML, Qian Y, and Croen LA. (2015). A study of
physician knowledge and experience with autism in adults in a large
integrated healthcare system. Journal of Autism and Developmental
Disorders 45: 4002-4014.
9. Blackwell DL, Lucas JW, Clarke TC. (2014). Summary health
statistics for U.S. adults: National Health Interview Survey, 2012.
National Center for Health Statistics. Vital Health Stat 10(260).
www.cdc.gov/nchs/data/series/sr_10/sr10_260.pdf
10. Correll CU, and Carlson HE. (2006). Endocrine and metabolic
adverse effects of psychotropic medications in children and
adolescents. Journal of the American Academic of Child and Adolescent
Psychiatry 45(7): 771-791.
11. Kaiser Family Foundation. (April 1, 2016). An Overview of
Medicare. kff.org/medicare/issue-brief/an-overview-of-medicare/

42 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
Mental Health and Health Care

Many had co-occurring Special note: All data on mental health conditions in NCI’s
2014-15 Adult Consumer Survey (ACS) came from background
mental health conditions information in state records. Caution should be used in
interpreting the data in this chapter, as other diagnoses or
and behavioral challenges information about medications may not have been recorded
which were often treated with in state records. That said, these statistics are still important,
especially given that we don’t know whether DD services in
medications. general are well-designed for meeting the unique needs of adults
with ASD who have co-occurring mental health issues.

Our key findings

Mental health conditions
• Over half (54%) of adults with autism spectrum
disorder (ASD) had at least one mental health Surveyors used background records to answer, “What other
condition (including anxiety, mood disorder, disabilities are noted in this person’s record?” given a list of
psychotic disorder, and/or other mental illness) in the following mental or neurological health conditions: mood
addition to ASD. disorder (e.g., depression, mania, bipolar), anxiety disorder (e.g.,
obsessive disorders, panic disorders), behavior challenges (e.g.,
• Almost half (46%) of adults with ASD had behavioral aggression, self-injurious behavior), psychotic disorder (e.g.,
challenges including disruptive, self-injurious and/or schizophrenia, hallucinations), other mental illness/psychiatric
destructive behaviors. diagnosis, cerebral palsy, brain injury, seizure disorder/
• Six in 10 adults with ASD (64%) took medication neurological problem, chemical dependency, Down syndrome,
for mood disorders, anxiety and/or psychotic Prader-Willi syndrome, or other disabilities. (Note: Seizure
disorder, and/or behavioral challenges. This rate disorder and neurological problems are discussed in the Health
was much higher than among other developmental and Health Care chapter.)
disability (DD) service users.
• 44% of adults with ASD took medications for Adults with ASD who participated in the 2014-15 ACS
behavioral challenges - almost twice the rate of other reportedly had a variety of mental health conditions in addition
DD service users. to ASD. These included anxiety, mood disorders, psychotic
disorder, and other mental illnesses. The only condition that
varied by age was psychotic disorder, which was less common
among young adults (ages 18-24) than among middle-aged
Why mental health matters adults (ages 45-64). Rates of the most common condition,
anxiety, did not vary by age, or by whether the individual used
Rates of co-occurring mental health conditions are higher spoken or nonverbal communication. However, anxiety was
in people with ASD compared to the general population, more common in the records of those with ASD compared to
particularly in regard to anxiety, depression, and schizophrenia. other DD service users.
[1-2] The challenges posed by these additional conditions
can make it more difficult to work, live independently, and Over half (54%) of adults with ASD had at least one of
participate in the community. these mental health conditions in addition to ASD, and
co-occurrence of mental health conditions increased with age.
Medications are often used to address co-occurring mental
health conditions. An earlier survey of National Core Indicator
(NCI) survey participants found that adults with ASD took
psychotropic medications at higher rates than those without
ASD - with 42% of those with ASD taking medications for
mood, 41% for anxiety, and 49% for behavioral challenges.
However, even though medication rates were higher, those with
ASD were less likely to have a diagnosed mental illness.[3]

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 Mental health conditions in adults with Challenging behavior was more common
ASD versus other DD service users. in adults with ASD.
Anxiety 37% Almost half (46%) of adults with ASD had behavioral challenges
disorder (defined below) - across age groups. The rate of behavioral
23% challenges in those with ASD was higher than that of other DD
service users.
Mood 30%
disorder
30% Behavior challenges were more
12% common in adults with ASD than other
Psychotic
disorder
DD service users.
12%

Other mental 12% Adults with

illness ASD
46%
9%
Percentage of adults with mental health condition

Source: NCI Adult Consumer Survey 2014-15

Other DD 27%
service users

The presence of other mental health Percentage of adults with behavior challenges
conditions in adults with ASD Source: NCI Adult Consumer Survey 2014-15
increased with age.

18-24 47%

25-29 53% Types of challenging behaviors

Age

Self-injurious behavior: attempts to cause harm

30-44 54% to one’s own body, for example, by hitting or biting
self, banging head, scratching or puncturing skin,
ingesting inedible substances, or attempting suicide
45-64 61%
Percentage of adults with ASD with any mental Disruptive behavior: interferes with the activities
health condition of others, for example, by laughing or crying without
apparent reason, yelling or screaming, cursing, or
Source: NCI Adult Consumer Survey 2014-15 threatening violence

Destructive behavior: externally-directed, defiant

behavior, for example, taking other people’s property,
property destruction, stealing, or assaults and injuries
to others

Source: NCI Adult Consumer Survey 2014-15

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 Over half (55%) of adults with ASD needed some support or Less than half of adults with ASD who
extensive support to manage disruptive behavior, while others
needed support to manage destructive behavior or self-injurious
used DD services had a behavior plan.
behavior. These rates did not differ by age. We don’t know how About four in 10 adults with ASD (43%) who used DD services
many actually received this help or what the nature of this had a behavior plan for challenging behaviors. Fewer younger
support was. The high rate of self-injurious behavior stands in adults had a behavior plan than middle-aged adults. Of those
contrast with the high rates of people who reported very good to adults who had behavioral challenges, 68% had a behavior plan.
excellent general health.

Over half of adults with ASD needed What is a behavior plan?

some or extensive support to manage A behavior plan is based on an assessment of an
disruptive behaviors. individual’s challenging behavior. The plan includes a

Percentage of adults with ASD

description of the individual’s strengths, preferences
and interests, the goal(s) related to diminishing/
55% eliminating the behavior, and applicable information
41% 39% about the nature of the behavior and potential
triggering events. The plan should describe the
interventions and accommodations that will contribute
to the goal(s). It should also include the ways in
which progress will be monitored, the staff who will
be responsible for the interventions, and the length of
time that the plan will be in place.
Disruptive Destructive Self-injurious
behavior behavior behavior
Source: NCI Adult Consumer Survey 2014-2015
Type of challenging behavior

Source: NCI Adult Consumer Survey 2014-15

Adults with ASD were more likely to have a

Adults with ASD were more likely to need behavior plan than other DD service users.
support to manage challenging behaviors
than other DD service users.
Adults with
ASD 43%
Self-injurious 39%
Type of challenging behavior

behavior
19%
55%
Disruptive
behavior 36% All of DD
service users 24%
Destructive
41%
behavior 23% Percentage of adults with a behavior plan
Percentage of adults with the support need
Source: NCI Adult Consumer Survey 2014-15

Source: NCI Adult Consumer Survey 2014-15

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 Adults with ASD with severe or profound ID Psychotropic medication use was fairly
were more likely to have a behavior plan common in adults with ASD.
than those with lower levels of ID.
ACS surveyors used background records to answer, “Does this
person currently take medication to treat mood disorders,
No ID 23% anxiety, and/or psychotic disorders?” and “Does this person
currently take medications for behavioral challenges?” Overall,
six in 10 adults in the ACS with ASD took medication for
Mild 38%
Level of ID

mood disorders, anxiety and/or psychotic disorder, and/or

behavioral challenges. This rate was much higher compared
Moderate 47% to all other DD service users.

Overall rates of medication use varied by age; 55% of adults age

Severe/ 58% 18-24, 63% of adults age 25-29, 67% of adults age 30-44, and
profound
71% of adults age 45-64 had either medication use reported in
Percentage of adults who had a behavior plan
their record.
Source: NCI Adult Consumer Survey 2014-15

Medication use was more common in

adults with ASD than in all other DD
Adults with ASD who used nonverbal service users.
communication were more likely to have a
behavior plan. Mood or psychotic 56%
disorders or
41%
Reason for medication

anxiety
Primary means of expression

Spoken
language 36% Behavioral 44%
challenges 21%

Either of the 64%

above
Nonverbal 53% 44%
communication Percentage of adults

Percentage of adults with ASD with a Source: NCI Adult Consumer Survey 2014-15
behavior plan

Source: NCI Adult Consumer Survey 2014-15

Adults with ASD with severe or profound ID
were more likely to take medication for
mood disorders and/or behavior problems.

No ID 53%

Mild 62%
Level of ID

Moderate 66%

Severe/ 73%
profound
Percentage of adults with ASD who took medication

Source: NCI Adult Consumer Survey 2014-15

46 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
 Adults with ASD who were white were the
most likely to take medication for mood This is how the ACS defined
disorders and/or behavior problems. medications for:
Mood disorders: any drug prescribed to elevate or
White 68% stabilize mood (reduce mood swings), e.g., to treat
depression, mania, or bipolar disorder.
62%
Race / Ethnicity

Black
Anxiety: any drug prescribed to treat anxiety
disorders (including obsessive disorders and panic
Other
race
52% disorders) or to reduce anxiety symptoms.

Psychotic disorders: any drug (e.g., anti-psychotic

Hispanic 54% or “neuroleptic”) used to treat psychotic disorders
Percentage of adults with ASD who took medication such as schizophrenia or psychotic symptoms such
as hallucinations.
Source: NCI Adult Consumer Survey 2014-15
Behavioral challenges: any drug prescribed for
a behavior modification purpose (e.g., such as a
stimulant, sedative, or beta-blocker), e.g., to treat
Use of medication to treat mood disorders ADHD, aggression, self-injurious behavior.

Over half (56%) of adults with ASD reportedly took medication

for mood disorders, anxiety, and/or psychotic disorders. This Source: NCI Adult Consumer Survey 2014-2015
varied by age, with fewer young adults taking medications than
middle-aged adults. Of those who took medication for mood
disorders, anxiety, and/or psychotic disorders, 68% reportedly
took 1-2 medications, 26% took 3-4 medications, and 6% took
five or more medications. These rates did not vary by age. More
of those with severe or profound ID took medication for mood Adults with ASD who were white more
disorders compared to those with no or milder ID. Medication commonly took medication for mood
for mood disorders did not vary by whether they person used disorders than other adults.
spoken language or nonverbal communication.
White 62%
Race / Ethnicity

Adults with ASD with severe or Black 51%

profound ID more commonly took
medication for mood disorders than Other
41%
race
adults with lower levels of ID.
No ID 46% Hispanic 44%
Percentage of adults with ASD who took medication
Level of ID

Mild 58%
Source: NCI Adult Consumer Survey 2014-15
Moderate 56%
Severe/
profound
62%
Percentage of adults with ASD who took medication

Source: NCI Adult Consumer Survey 2014-15

National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes | 47
 Use of medication to treat behavioral Adults with ASD who were white were the
challenges most likely to take medication for
behavior problems.
Overall, 44% of adults with ASD took medications for
behavioral challenges - almost twice the rate of other DD
service users. Use of medication for behavioral challenges was White 47%
less likely than use of medication for mood disorders, anxiety,
and/or psychotic disorders. Of those who took medication for
44%

Race / Ethnicity
Black
behavioral challenges, 76% took 1-2 medications, 21% took
3-4 medications, and 4% took five or more medications. Use
Other
of medication for behavior challenges was higher among those
race
36%
with severe or profound ID and those who used nonverbal
communication.
Hispanic 39%
Percentage of adults with ASD who took medication
Adults with ASD with severe or profound
Source: NCI Adult Consumer Survey 2014-15
ID were more likely to take medication
for behavior problems than those with
lower levels of ID.
Looking Ahead
No ID 29%
Please refer to the Looking Ahead chapter for discussion of
research gaps and next steps for learning more about Mental
Level of ID

Mild 38% Health and other topics.

Moderate 48%
References
Severe/
profound 56% 1. Croen LA, Zerbo O, Qian Y, Massolo ML, Rich, S, Sidney S,
Percentage of adults with ASD who took medication and Kripke C. (2015). The health status of adults on the autism
spectrum. Autism 19(7): 814-823.
Source: NCI Adult Consumer Survey 2014-15 2. Kohane IS, McMurry, Weber G, MacFadden D, et al. (2012). The
co-morbidity burden of children and young adults with autism
spectrum disorders. Plos One 7(4): e33224.
3. Human Services Research Institute and the National Association of
Use of medication for behavior problems State Directors of Developmental Disabilities Services. (April 2011).
What does NCI tell us about people with autism? - An update. NCI
was more likely in adults with ASD who Data Brief. Issue 3.
used nonverbal communication.
Primary means of expression

Spoken
language
39%

Nonverbal
communication
53%

Percentage of adults with ASD who

took medication

Source: NCI Adult Consumer Survey 2014-15

48 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
Employment and Other Day Activities

Most spent their days in unpaid, While paid employment is a desired outcome for many, finding
and keeping a job is hard for many people with ASD. Navigating
facility-based activities. the social dynamics of the workplace, coping with sensory
overload, organizing and completing tasks, and communicating
with coworkers may be challenging. How well a person handles
these challenges may be related to whether the job is a good
Our key findings match for their interests and abilities, whether the employer
knows how to successfully include employees with disabilities
• Paid, community-based employment was the least and whether co-workers are kind and know how to successfully
common outcome for adults with autism spectrum work alongside someone with ASD. Having a job also does not
disorder (ASD). Only 14% held a job for pay in the mean that a person is on a path to building a career. Both job
community. About one-fourth of adults with ASD had match and career potential are further influenced by whether
community employment as a goal in their service plan. jobs are available in one’s community.
• Over half (54%) participated in an unpaid activity in a
facility (where most other workers had disabilities).
• One-fourth (27%) had no work or activities, in either What were adults with ASD doing during
community-based or facility-based settings, in the two
weeks prior to the survey.
the day?
Information about employment and day activities was
gathered from state records. The ACS asked surveyors whether
participants engaged in paid work or unpaid activities in
community-based or facility-based settings within the last two
Why what people do during their day weeks. Some participated in more than one type of work or
matters activity.
State developmental disability (DD) services are a key source of
public funding for long-term supports and services for people
with disabilities. These services support people in their place of
living (See Living Arrangements chapter), but they also support At a glance: Work and day activities
the work and activities that people do during the daytime. Work
and activities occur in two main settings. In the Adult Consumer
Survey (ACS), a community-based setting was defined as a
place where most people did not have disabilities. A facility-
based setting was a place where most people had disabilities. (See
examples below). In both settings, work and activities sometimes
earn pay, but not always. Some people only engage in paid work
or only do unpaid activities, but other people’s days consist of a
combination of paid and unpaid work and other activities that
are often supported by state DD services. 72% of all adults with ASD participated
in at least one work or day
activity in the two weeks prior
to participating in the ACS.

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Work and day activities

Of adults with ASD who participated in the ACS, work and activities were reported for the two weeks
prior to the survey. Some participated in more than one type of work or activity.

What is that? What does it look like?

32% 14% Work done in the community (with or

without supports) for pay, in settings that
Any individual paid job in
the community, or a job as
were in Worked in
have people with and without disabilities part of a work crew (people
Community- paid jobs in the
with disabilities working
based settings community
together in a community-
based setting, such as a
group that stocks shelves
in the grocery store)

22% Services and supports that are not paid

work, but instead focus on community
Volunteer work, community
education, going to the
participated in
involvement such as recreational, library, going to the gym,
unpaid activities
educational, or volunteer activities, often running errands, dining out,
in the community
identified as community integration or exploring the community2
community participation services. [1]
This service is referred to as Community-
Based Day Services, Community-
Based Non-work, or Community Life
Engagement.

51% 15% Job services provided in a setting “where

the majority of people have a disability
A job in a sheltered
workshop
were in Facility- Worked in paid
and receive continuous job-related
based settings jobs in facilities
supports and supervision. Facility-based
work services are also referred to as
sheltered work, work activity services, or
extended employment programs.3

42% Facility-based non-work activities are

adult training services provided for
Activities (in a non-
integrated setting run by
participated in
persons with developmental disabilities an agency sometimes
unpaid activities
(non-integrated) in a facility that is often called a day program or
in facilities
owned by an agency. These services day habilitation center)
provide training and education to build designed to work on daily
skills needed to work or participate in living skills, social skills, or
the community. prevocational training

Source: NCI Adult Consumer Survey 2014-2015. Additional sources as cited.

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Most adults with ASD currently had
some type of work or other day What DD services are offered to support
activity. work and activities?
Overall, three out of four adults with ASD (72%) in the DD services are delivered in community-based or facility-
ACS were participating in some type of work or other day based settings. Which services a person receives is supposed
activity – with some adults participating in more than one to be determined through a person-centered planning
type of job or activity. The fact that three out of four people process and written into an individualized plan called a
with ASD had some type of day activity sounds positive, person-centered services and supports plan. The services
but what were these people doing? When you break down listed below are primarily funded through Medicaid Home
the numbers, a different story emerges. and Community-Based Services (HCBS) waivers (see
Background chapter). They are provided to help people
Of those who participated in any type of work achieve employment-related goals in their service plan.[4]
or other day activity...
• 78% participated in unpaid activities, either Habilitation services are supposed to assist individuals
community-based or facility-based. acquire, retain and improve the self-help, socialization,
and adaptive skills needed to successfully live in home and
• 70% participated were in facility-based work or
community-based settings. Little research has evaluated the
activities.
quality or effectiveness of habilitation services. Expanded
• Only 44% were in community-based work or activities. Habilitation services related to employment include:
• Only 38% participated in paid work, either
community-based or facility-based. • Pre-vocational services. These are general learning and
work-like experiences, including volunteer work and are
primarily delivered in a setting that only includes people
What about those who had no work with disabilities. These services do not teach job-specific
skills, but instead teach general skills to prepare a person
or activities? for a future job such as completing tasks, workplace
One in four adults with ASD (27%) had no work or safety, getting along with others and attendance. Pre-
other day activities within the previous two weeks.* vocational services are provided to people who are
This rate was very similar to that of all other DD service not able to work in the community or participate in
users (26%). Adults with ASD in the ACS were less likely sheltered workshops, and who are unlikely to achieve
to have employment or other day activities if they were competitive employment at or above minimum wage.
younger, had either no intellectual disability (ID) or severe Pre-vocational services are different than vocational
or profound ID, primarily used nonverbal communication, services funded through state Vocational Rehabilitation
and had poor or fairly good overall health. Of those who (VR) agencies. VR services are designed to help people
had no work or other day activity, 22% reported that get and keep a community-based job, and teach job-
they needed some type of service. Those needs included specific skills.
employment services (21%), education or training (29%),
or transportation (18%) • Supported Employment services. These services
include “supervisory services, training, transportation,
*NOTE: Adults who had missing information on and adaptive equipment” needed to perform a paid
participation in employment or other day activities job in an integrated setting for compensation at or
were not considered for this indicator. For example, if it above minimum wage. People who receive supported
was recorded that a person did not have paid or unpaid employment services need intensive supports in order to
community employment, but information on paid or work - such as job discovery or assessment to help find
unpaid facility-based employment was unknown, we a job, coaching provided at the job to teach job tasks, or
excluded this person from consideration for this particular transportation to a job. Supported employment does not
indicator. For this reason, the percentage of adults with include volunteer work and cannot duplicate supported
ASD who had no work or other day activities and the employment services available through VR. VR typically
percentage of adults with any type of work or other day provides time-limited supported employment services,
activity do not sum to 100%. About 1% of adults with but supported employment through DD services can be
ASD had unknown responses for all four types of work or longer-term.
day activity.

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 Community-based employment Those who used spoken language were
or other day activities more likely to have a paid job in the
community.

One in three adults with ASD participated Spoken

Primary means of expression

in community-based settings. language
19%

32% had a paid job or

unpaid activity in
Nonverbal
communication
3%

the community Percentage of adults with ASD who had a

in the two weeks paid job in the community
prior to the ACS.
Source: NCI Adult Consumer Survey 2014-15

Of those who had a paid job in the community... Nearly two-

thirds (62%) received publicly funded services to facilitate their
Source: NCI Adult Consumer Survey 2014-15
employment, and 34% were working in a job done primarily
by a group of people with disabilities. Most adults experienced
continuity in their current employment, having worked 10 of the
What do we know about…paid work in the last 12 months in the same position (84%). The average length
of time spent in this position was 5 years (range: 1 month to 33
community? years).
Of all adults with ASD... Only 14% held a paid job in the
community in the two weeks prior to participating in the ACS.
This did not vary by age group, or by race/ethnicity, and was Few had community-based employment
essentially the same rate as other DD service users (16%). as a goal in their service plan.
Adults with no ID or with mild ID more often had paid jobs in According to background records, about one-fourth (27%) of
the community than those with more severe levels of ID. Adults adults with ASD had community employment as a goal in
who used spoken language as their primary means of expression their service plan. This did not vary by race/ethnicity, but did
were more likely to have paid jobs in the community than adults vary by age (36% of adults age 18-24, 31% of adults age 25-29,
who primarily used nonverbal communication 23% of adults age 30-44, and 17% of adults age 45-64). More
adults with no ID or mild ID had community employment
in their service goals than adults with moderate or severe/
Adults with ASD who had no ID or mild ID profound ID. More adults who
were more likely to have a paid job in the It is important to
used spoken language as their
community than those with more remember that the primary means of expression
significant ID. rate of ID varies had community employment
by age. Differences as a goal in their service plan
No ID 23% in outcomes across than adults who primarily used
age groups might nonverbal communication. An
simply reflect the
Level of ID

Mild 21% fact that older equal number of other adult DD

individuals in this service users had community
survey were more employment as a goal in their
Moderate 10% likely to have ID. service plan.
Severe/ 4%
profound
Percentage of adults with ASD who had a paid job in
the community in the previous two weeks

Source: NCI Adult Consumer Survey 2014-15

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 Adults with ASD who had no ID or mild ID What types of paid jobs did people have in
were more likely to have community the community?
employment as a goal.
Of those who had a paid job in the community…. People
spent an average of 30 hours working in the prior two-week
No ID 41% period, earning a median wage of $194 (total over the two week
period). Almost one-fourth (23%) got vacation or sick time at
Mild 41% their job.
Level of ID

The most common job types were building and grounds cleaning
Moderate 21% and maintenance; and “other” types of jobs. (Note: There was
no additional data about what these “other” jobs were.) Food
Severe/
profound
9% preparation or food services jobs, and retail jobs, were the
next most common, followed by assembly, manufacturing, or
Percentage of adults with ASD who had community packaging; and general office support and administration jobs.
employment as a goal in their service plan
The most common jobs in adults with ASD were the same as
Source: NCI Adult Consumer Survey 2014-15 those of other DD service users. Comparatively, people with
ASD who exited VR during FFY 2014 most commonly worked
in office and administrative support (22%), food preparation
and serving (16%), and building and grounds cleaning and
Adults with ASD who used spoken maintenance (10%).[5]
language were more likely to have
community employment as a goal. Common job types in adults with ASD
versus all other DD service users.
Primary means of expression

Spoken
language 36% Building and grounds 28%
cleaning and maintenance

Food prep and services

18%
Nonverbal 9%
communication
17%
Retail
Percentage of adults with ASD who had
Type of job

community employment as a goal in their

service plan
Assembly, manufacturing,
7%
Source: NCI Adult Consumer Survey 2014-15 and packaging

6%
General office and
administrative support

Materials handling and 3%

mail distribution

20%
Other

Percentage of adults with a paid job

in the community

Source: NCI Adult Consumer Survey 2014-15

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 In their own voices
Self-respondents were able to answer questions about
employment using yes, in-between, or no. Similarly, some People with I/DD want to be heard. While
questions allowed for responses of sometimes. For this In self-report measures are never flawless, they are an
Their Own Voices section, those who answered in-between important attempt at measuring the opinions and
were included as responding no, and those who answered satisfaction levels of people whose quality of life may
be related to the services they receive. Results may
sometimes were included as responding yes. be influenced by who asked the questions, how they
were asked, who else was in the room, and how well
the person understood. Despite these concerns, we
Opinions about community-based present self-responses for people who reportedly
understood the questions and gave consistent
employment responses (per the surveyor), to honor their voices.
Half of the individuals with ASD in the ACS self-
Twenty-nine percent of self-respondents with ASD reported information about their personal experiences.
reported that they had a paid job in the community. This
did not vary greatly by age. Most (87%) liked where
they worked, but about a third (36%) reported that they
would like to work somewhere else.
It is important to know what adults want,
Of self-respondents who did not have a paid job in so it can be reflected in their service plan.
the community, half said they would like to have a
community-based job. But, only 52% of these self-
respondents actually had community employment as
of self-respondents
a goal in their service plan. More young adults (18-24
years) reported wanting a paid job than middle-aged 50% with ASD who
adults (45-64 years) with ASD. were unemployed
said that they
would like to have
Opinions about day activities
a job.
Two thirds (65%) of self-respondents with ASD
said they participated in a day activity that did not
include community-based employment. Of those
who participated in day activities, 89% said they liked
doing that activity, and 29% said they would like to go Source: NCI Adult Consumer Survey 2014-15
somewhere else or do something else.

Self-report on paid community employment

In regard to safety in the community, mostly concurred with what was noted about
many (88%) self-respondents reported paid community-based employment in people’s
that they were ever scared at work or in state records. Of self-respondents with ASD who
their day activities. had a note in their state records of paid community
employment in the two weeks prior to participation
in the ACS, 93% self-reported that they had a paid
community job. Similarly, 79% of self-respondents with
ASD who said they had a paid job in the community
had a notation of paid community employment in their
state record.

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What do we know about… unpaid Of all adults with ASD... Over half (51%) had any type of
facility-based employment or day activity, either paid or unpaid,
activities in the community? in the two weeks prior to the ACS. Recall that a facility-based
Of all adults with ASD... Nearly one-fourth (22%) had setting is one in which most of the workers or participants have
an unpaid activity in the community (often referred to as a disability. Examples include sheltered workshops or activity
community-based non-work) in the two weeks prior to centers (sometimes called day programs or day habilitation
participating in the ACS. This did not vary greatly by age. centers) that teach skills to prepare people with disabilities for
Participation in unpaid activities in the community did not vary community living. A person in a paid facility-based job may
greatly by race/ethnicity, level of ID or by primary means of work primarily with co-workers with disabilities on simple,
expression. Eighteen percent of all other DD service users had an repetitive activities, such as packing produced goods, often for
unpaid job in the community. well below minimum wage. A person in an unpaid facility-based
activity may spend time learning computer skills, money skills,
Of those who participated in unpaid activities in the and going on community outings such as trips to the store. The
community… Those with an unpaid community-based activity emphasis of this activity is skill building to promote independent
participated an average of 27 hours over the previous two weeks. functioning.
Almost three-fourths (73%) received publicly funded services or
supports to facilitate participation in this activity. Over half of
these unpaid community activities (60%) occurred in segregated What do we know about… paid work in
settings (mostly people with disabilities).
facilities?
Of all adults with ASD... About 15% had paid work in a
facility-based position in the two weeks prior to participating in
Facility-based employment or the ACS. This did not vary greatly by age or by race/ethnicity.
Adults with mild ID were the most likely to participate in a paid
other day activities facility-based position, and those with severe or profound ID or
with no ID were less likely to have a paid facility-based position.
Federal policies discourage participation in Participation in a paid facility-based position did not vary by the
primary means of expression in adults with ASD. Those with
facility-based settings. ASD were less likely to have a paid facility-based job compared
to 22% of other DD service users.

Of those who had paid work in facilities… On average, adults

51% of adults with
ASD in the ACS
worked 33 hours in their position in the prior two weeks. The
median wage earned over that two week period was $37 (total
had a paid job or over the two week period).
unpaid acitvity in
a facility in the
prior two weeks. Adults with ASD who had mild ID were
the most likely to have a paid facility-
based job.
No ID 12%
Source: NCI Adult Consumer Survey 2014-15
Mild 23%
Level of ID

Moderate 16%

Severe/
profound
10%
Percentage of adults with ASD who had a paid job in
a facility-based setting

Source: NCI Adult Consumer Survey 2014-15

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 What do we know about… unpaid SPOTLIGHT:
activities in facilities?
Opportunities for Choice
Of all adults with ASD... 42% participated in an unpaid
facility-based activity in the two weeks prior to participation in
the ACS. Adults with severe or profound ID were the most likely ACS participants (or their proxies) were asked, “Who chose
to participate in an unpaid facility-based activity, followed by (or picked) the place where you work? Did you help make the
those with moderate ID. Adults who used spoken language as choice?” (or “Who chose the place where s/he works? Did s/he
their primary means of expression were less likely to participate have any input in making the decision?”) Of adults with ASD
in unpaid facility-based activities than those who used nonverbal with a paid job in the community, 35% chose the place they
communication. Adults with ASD participated in unpaid work, while 36% had some help in deciding, and 29% had the
facility-based activities at the same rate as other DD service users. decision made for them. Of adults with ASD who had a facility-
Participation in unpaid facility-based activities did not vary by based job or day activities, or community-based (non-work)
race/ethnicity. activities, 20% chose the place for themselves, while 32% had
some help in deciding, and almost half (48%) had this place
Of those who had unpaid activities in facilities… On average, chosen for them. We don’t know the degree to which people felt
adults participated 45 hours in their activity during the prior two they could actually make employment decisions for themselves.
weeks.

Participation in unpaid, facility-based

SPOTLIGHT:
activities increased with more significant Current Trends in Funding
levels of ID. for Services
No ID 29% The bulk of the funding for state DD services comes from
Medicaid Home and Community Based Services (HCBS)
funds (see Background chapter). Therefore, guidance from
34%
Level of ID

Mild
the Centers for Medicare and Medicaid Services (CMS) has
an effect on state DD services. CMS says that integrated,
Moderate 47% community-based employment is a priority for how services
funded through Medicaid waivers are implemented in states.
Severe/ [4] Despite this, the number of people with I/DD who spend
profound 55% their days doing non-work activities has continued to grow
Percentage of adults with ASD who had an unpaid over time.[6] When states were directed to focus their services
job in a facility-based setting on community-based settings, community-based non-work
was initially used by states as a substitute for community
Source: NCI Adult Consumer Survey 2014-15
employment. More recently, “States are starting to move from
an exclusive focus on employment to thinking about how other
Those who used nonverbal communication community engagement activities relate to and can promote
employment.”[7]
were more likely to participate in unpaid,
facility-based activities. Home and Community Based Services (HCBS) Medicaid
waivers funded most of the services used to support adults with
Primary means of expression

ASD in their work and day activities. To be clear, waivers pay for
Spoken
language
37% services. They do not pay the wages people earn. Also remember
that some states only included people in their ACS sample
who received HCBS funding, which affects our findings about
funding.

Nonverbal 51%
communication

Percentage of adults with ASD with an unpaid

position in a facility-based setting

Source: NCI Adult Consumer Survey 2014-15

56 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
 Most adults with ASD who had any type of Looking Ahead
work or activity and received funding for Please refer to the Looking Ahead chapter for discussion
work supports and services got them from of research gaps and next steps for learning more about
an HCBS waiver program. Employment and Other Day Activities and other topics.

HCBS Waiver 80%

Funding for day or employment supports

References
State or county 11% 1. Sulewski JS, Butterworth J, and Gilmore DS. (May 2006).
ID/DD agency Community-based non-work services: Findings from the
ICF/ID day national survey of ay and employment programs for people with
9% developmental disabilities. Institute for Community Inclusion:
program
Research to Practice, Issue 42.
VR agency 2% 2. Sulewski JS (2010). In search of meaningful daytimes: Case studies
of community-based nonwork supports. Research & Practice for
Persons with Severe disabilities 35(1-2): 39-54.
Other 2% 3. Winsor, J. E., & Migliore, A. (2011). Decline in the provision
Percentage of adults with ASD participating of facility-based work services for people with intellectual and
in any work or activity who received funding developmental disabilities. Data Note Series, Data Note 35. Boston,
MA: University of Massachusetts Boston, Institute for Community
Inclusion.
Note: the state of California did not report on the source of support for
employment or day programs. 4. Centers for Medicare & Medicaid Services. (September 16, 2011).
Informational Bulletin: Updates to the Section 1915(c) Waiver
Source: NCI Adult Consumer Survey 2014-15
Instructions and Technical Guide regarding employment and
employment related services. Available at www.cms.gov
5. Roux AM, Rast JE, Anderson KA, and Shattuck PT. (2016).
National Autism Indicators Report: Vocational Rehabilitation.
HCBS waivers paid for services to support people across all four Philadelphia, PA: Life Course Outcomes Research Program, A.J.
types of employment or day activities: Drexel Autism Institute, Drexel University.
6. Butterworth J, Smith, FA, Winsor J, Ciulla Timmons J, Migliore
A, & Domin D. (2016). StateData: The national report on
HCBS waivers paid for services to support employment services and outcomes. Boston, MA: University of
people across all four types of employment Massachusetts Boston, Institute for Community Inclusion.

and day activities. 7. Sulewski JS, and Ciulla Timmons J. (2015). Introduction to
Community Life Engagement. www.thinkwork.org/sites/thinkwork.
Paid community- org/files/files/CLE_issue1.pdf)
based job 81%
Type of work or activity

Unpaid community-
based activity 88%

Paid facility-based
job
67%

Unpaid facility-
based activity 80%
Percentage of adults with ASD
participating in any work or activity who
received funding
Note: the state of California did not report on the source of support for
employment or day programs.
Source: NCI Adult Consumer Survey 2014-15

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58 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
Living Arrangements

Many adults resided with Nearly half of adults with ASD lived with
parents or relatives. a parent or relative.
Information about where people lived came from state records
and reflected where people were living at the time of the Adult
Consumer Survey (ACS). Overall, almost half (49%) of adults
Our key findings
with ASD lived in the home of a parent or relative.
• Almost half (49%) of adults with autism spectrum
disorder (ASD) lived in the home of a parent or
relative. Many of those who lived with their families
had been there for more than 5 years. Adults with ASD were most likely to
• Nearly four in ten adults with ASD who lived with be living with family members.
parents or relatives received no paid in-home supports.

Percentage of adults with ASD

Of these, 37% indicated they needed some type of
supports or services.
• One-fourth (27%) lived in group homes with up to 15 49%
people who also had disabilities. It was uncommon for
adults with ASD to live in institutions. 27%
10% 8% 5%
Why living arrangements matter Parent/ Group Indepen- Institution Other
relative home dent home
For all people, where we live and the supports we receive in
that living situation impacts our quality of life. Where people Living arrangement
with intellectual or developmental disabilities (I/DD) tend to
live has changed dramatically over the last 50 years. Prior to Source: NCI Adult Consmer Survey 2014-15
the deinstitutionalization movement in the late 1970’s, 84% of
people with I/DD who received state-funded residential services
lived in large institutional settings. By 2010, 75% lived in
settings with 6 or fewer people.[1] More people with I/DD now
The percentage of adults with ASD
live in the community in a home or a group home. They may
who lived with a parent or relative It is important to
receive assistance from direct support staff in their home, but remember that
varied widely by age. Three-quarters
fewer live in large institutional settings that are directly operated the rate of ID
of young adults (18-24 years)
by states. varies by age.
lived at home and half of those Differences in
ages 25-29 years, but this declined outcomes across
Whereas youth with I/DD transition into a variety of
dramatically in the middle-aged age groups might
community-based living arrangements, most young adults with simply reflect
(45-64 year) group. It also varied
ASD continue living with their family members in the early the fact older
by level of ID, with more adults
years after leaving high school.[2-3] A study of NCI participants individuals in this
with no ID living in the home of a survey were more
found that 38% of DD service users with ASD lived at home
parent or relative (64%) than adults likely to have ID.
with family - a rate higher than participants who did not have
with mild ID (52%), moderate
ASD (29%).[4]
ID (50%) or severe or profound
ID (33%). Adults with ASD who used spoken language as their
primary means of communication were more likely to live in the
home or a parent or relative (53%) than adults who primarily
used nonverbal communication (42%). Adults with other DDs
were less likely to live in the home of a parent or relative (41%).

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 Young adults with ASD were more likely to live with family than middle-aged adults.
Living arrangement
Parent/relative Group home Independent home Institution Other

18-24 72% 13% 7% 3% 5%

Age range (years)

25-29 59% 24% 9% 3% 5%

30-44 44% 32% 12% 8% 5%

45-64 21% 40% 12% 20% 6%

Source: NCI Adult Consumer Survey 2014-15

Adults with ASD of Hispanic ethnicity were Very few lived on their own. One in ten adults with ASD who
most likely to live in the home of a parent participated in the ACS lived independently in a home or
apartment, compared to 15% of adults with other DDs. This
or relative. rate did not vary greatly by age. Of those adults with ASD who
White 42% lived in an independent home or apartment, 62% owned or
rented their own home; while 16% had a family, guardian, or
friend who owned the home; and 14% lived in a home owned by
Race / Ethnicity

Black 58% a private agency.

Other
race 66%
One-fourth lived in group homes.
One in four (27%) adults with ASD
Hispanic 70% in the ACS lived in a group home, What is a
Percentage of adults with ASD who lived in with middle-aged adults more likely group home?
the home of a parent or relative to live in a group home than young A group home is a
Source: NCI Adults Consumer Survey 2014-15 adults. Adults with ASD who used home or apartment
spoken language as their primary where a group
means of communication were less of people with
disabilities live,
likely to live in a group home (24%) usually owned
than adults who used non-verbal and staffed by an
communication (34%). The overall agency. Sizes of
rate was similar to the percentage group homes vary
of adults with other DDs who lived between 1-15
residents with
in a group home (28%). Of adults smaller group
with ASD who lived in a group homes being more
home, over half (57%) lived in a common.
group home with 4-6 residents with
disabilities, while 31% lived in group
home with 1-3 residents with disabilities, and 12% lived in group
home with 7-15 residents with disabilities. Sizes of group homes
that people with ASD lived in were similar to group homes for
people with other DDs.

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 Only a small percentage lived in Adults tended to remain living with
institutional care settings. parents or relatives.
Eight percent of adults with ASD lived in an institutional care Nearly two-thirds (64%) of adults with ASD had lived in
setting - the same rate as adults with other DDs. Institutional their current home for more than five years. This did not vary
long term care settings, as defined by Medicaid, include greatly by age. Adults with ASD who lived in the same place for
intermediate care facilities for people with I/DD (called ICF/ more than five years, more commonly lived in the home of a
IDs). ICF/IDs are residential facilities that deliver care to people parent or relative (81%) versus an institution (61%), in a group
who require high levels of supervision and “active treatment home (49%), or in an independent home or apartment (33%).
programs” defined as “aggressive, consistent implementation of a
program of specialized and generic training, treatment and health
services.” These facilities are primarily funded with ICF/ID Support in the home
funds. Read more about funding at the end of this chapter.
Background records were used to answer, “What amount of paid
Middle-aged adults with ASD were more likely to live in an support does this person receive at home?” The levels of support
institutional setting than younger adults (20% versus 3%). Of provided to adults with ASD varied from continuous (24-hour)
adults with ASD who lived in an institutional setting, 44% lived on-site care, to daily or less than daily support, to as-needed visits
with 16 or more people, while 24% lived with 4-6 people, and or phone calls to check in. Nearly half (49%) of adults with ASD
9% lived with 1-3 people. Another 8% lived in a different type of received 24-hour on-site support in their home. This varied by
specialized institution. This was similar to adults with other DDs. living arrangement. For example, nearly all adults in institutions
or in group homes had round-the-clock supports, but this was less
Note: California and New Hampshire did not report on the size common for adults in independent homes or apartments, or for
of the institutions for their residents, so those residents are not adults living in the home of a parent or relative. Overall, nearly
included in these statistics. four in ten adults with ASD (38%) who lived with parents or
relatives received no paid in-home supports. Of these, 37%
indicated they needed services or supports. Their most frequent
support needs were education or training services (43%), social or
relationship services (37%), and respite services (31%).

Adults with ASD who lived in group homes or institutions were more likely to receive
intensive hours of in-home supports.
Amount of support needed 24-hour on-site Daily on-site Less than daily As needed visits or phone None of the above

Parent/ relative home 14% 23% 20% 38%

Type of residence

Independent home 44% 21% 25% 6%

Group home 95% 1%

Institution 95% 2%

Source: NCI Adult Consumer Survey 2014-15

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 In their own voices
Self-respondents were able to answer questions about living
arrangements using yes, in-between, or no. Similarly, some questions People with I/DD want to be heard.
While self-report measures are never
allowed for responses of sometimes. For this In Their Own Voices flawless, they are an important attempt at
section, those who answered in-between included as responding no, measuring the opinions and satisfaction
and those who answered sometimes were included as responding yes. levels of people whose quality of life may
be related to the services they receive.
Results may be influenced by who asked
the questions, how they were asked,
Most liked where they lived. who else was in the room, and how well
the person understood. Despite these
Adults with ASD who were able to self-respond to survey questions concerns, we present self-responses for
were asked, “Do you like your home or where you live?” Most people who reportedly understood the
reported that they liked their home. This did not vary greatly by age questions and gave consistent responses
or the type of home, level of ID, or primary means of expression. (per the surveyor), to honor their voices.
Half of the individuals with ASD in the
Most adults with other DDs who answered this survey question on ACS self-reported information about their
their own also said they liked their home (90%). personal experiences.

Self-respondents were asked whether they Some interacted with neighbors.

liked where they lived. Questions about safety and neighborhood
interactions were only asked to self-respondents.
Over half (59%) of adults with ASD reported that

91%
they ever talked to their neighbors (either speaking
of self- to them sometimes or regularly). This varied by the
respondents type of living arrangement. More adults who lived
with ASD said in an independent home or apartment (68%) or
they liked their in the home of a parent or relative (61%) spoke to
their neighbors than those living in group homes
home.
(50%) or institutions (39%).

Source: NCI Adult Consumer Survey 2014-15

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Few with ASD chose their own home or ACS participants (or their proxies) were then asked “Did you
choose (or pick) the people you live with (or did you choose
who lived with them. to live by yourself )?” (or “Did this person choose any of the
ACS participants (or their proxies) were asked “Who chose (or people s/he lives with?”) Seventeen percent of adults with ASD
picked) the place where you live? Did you help pick the place reportedly choose their roommates, while 14% had some input
where you live?” (or “Who chose the place where s/he lives? Did in the choice. But 68% did not have a choice about roommates.
s/he have any input in making the decision?”) Sixteen percent The level of input in this choice varied by living arrangement. It
of adults with ASD reportedly chose their own home. Nearly was rare that adults with ASD who lived in an institution chose
one fourth (24%) had some input in choosing, but 60% had the their roommates (3%) or had some input in the choice (7%).
choice made for them. This did not vary greatly by age, but did It was also uncommon for adults who lived in a group home
vary by type of living arrangement. Adults with ASD who lived to choose their roommates (7%) or to have some input in the
in an institution rarely chose the place they lived, or gave input choice (14%). Half (51%) of adults who lived in an independent
about it. About one-fourth of those who lived in a group home home or apartment chose their roommates, or had some input in
had some input in the choice of living arrangement. About two- the choice (18%). This question was also not asked to those who
thirds of those who lived in an independent home or apartment lived in the home of a parent or relative.
chose their home, or had some input about it. This question was
not asked to those who lived in the home of a parent or relative.

Two-thirds of adults with ASD who lived in

a home on their own had at least some
input about where they lived.
Who chose the person's home?
Someone else chose Person had some input Person chose

Independent home 34% 31% 35%

Type of home

Group home 65% 25% 10%

Institution 86% 11% 3%

Source: NCI Adult Consumer Survey 2014-15

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Funding for Long Term Services and Looking Ahead
Supports Please refer to the Looking Ahead chapter for discussion
There are two main types of funding for long term supports of research gaps and next steps for learning more about
within different living arrangements. Employment and Other Day Activities and other topics.

Recall that Medicaid Intermediate Care Facilities for

Individuals with Intellectual Disabilities (ICF/ID) funding References
is primarily used to provide services to people with I/DD in 1. Larson, S.A., Ryan, A., Salmi, P., Smith, D., and A. Wuorio (2012).
state-run residential facilities. Most (82%) adults with ASD Residential Services for Persons with Developmental Disabilities:
who lived in a residential facility (institution) received ICF/ID Statues and trends through 2010. Minneapolis: University of
funding, while 9% received HCBS waiver funding, and 11% Minnesota, Research and Training Center on Community Living,
received some other type of funding. We note here that ACS data Institute on Community Integration.
indicates there are people who live in an ICF who do not get ICF 2. Roux AM, Shattuck PT, Rast JE, Rava JA, and Anderson KA.
funding. There are also a very few people who do not live in an (2015). National Autism Indicators Report: Transition into Young
ICF who get ICF funding. Adulthood. Philadelphia, PA: Life Course Outcomes Research
Program, A.J. Drexel Autism Institute, Drexel University.
Receipt of this type of funding varied by age, with 4% of adults 3. Anderson KA, Shattuck PT, Cooper BP, Roux AM, and Wagner
ages 18-24 receiving ICF/ID funding, 5% of those ages 25-29, M. (2014). Prevalence and correlates of postsecondary residential
8% of those ages 30-44, and 20% of those ages 45-64. status among young adults with an autism spectrum disorder. Autism
18(5): 562-570.
Home and Community Based Services (HCBS) Medicaid 4. Human Services Research Institute and the National Association of
waivers fund Long Term Services and Supports (LTSS) that State Directors of Developmental Disabilities Services. (April 2011).
support adults with ASD in their living arrangement. To be clear, What does NCI tell us about people with autism? - An update. NCI
waivers pay for services. They do not pay rent or mortgages. Data Brief. Issue 3.
Most (93%) adults with ASD who lived in a group home
received HCBS waiver funding, 4% received ICF/ID funding,
and 3% receiving some funding that was not ICF/ID or HCBS
waiver funding. Similarly, 93% of adults who lived in an
independent home or apartment received HCBS waiver funding
and 3% received some other type of funding. Most (89%) adults
with ASD who lived in the home of a parent or relative received
HCBS waiver funding, and 9% received some other type of
funding. Note: Recall that we told you earlier that four in every
10 adults who lived with parents had no in-home paid supports,
but they may have had other HCBS funding to pay for services
like employment or health care.

Also remember that some states only included people in their

ACS sample who received HCBS funding, which affects our
statistics about funding. Additionally, we do not have any
information about HCBS or ICF funding from California or
New Hampshire.

64 | National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood 2017 | drexel.edu/AutismOutcomes
Social and Community Participation

Most adults reportedly got Most adults with ASD participated at least
monthly in shopping and dining out.
out in the community monthly,
Adults with ASD (or their proxies) were asked about activities
but less than half chose their in the community. On a monthly basis, most adults with ASD
daily schedule. had been shopping (88%), out to a restaurant or coffee shop
(86%), out on errands or to appointments (80%), or out for
entertainment (72%) in the month prior to the survey. About
a third had been to a religious service or spiritual practice in
Our key findings the month prior to the survey (38%). These did not vary by
age. Two percent of adults with ASD had done none of those
• Most adults (over 80%) with autism spectrum disorder activities in the prior month. Responses were scored as no if they
(ASD) got out at least monthly to shop, eat out, run occurred in a non-integrated setting (settings that included only
errands, or for entertainment. Almost half had been on people with disabilities).
vacation during the last year.
• Most self-respondents with ASD (84%) said they
always had a way to get to where they wanted to go -
usually getting a ride from family or friends. Most adults with ASD had been shopping,
• Less than half (43%) of adults chose their daily out to a restaurant, or on errands in the
schedule on their own in regard to when they woke month prior to participating in the ACS.
up, ate, or went to sleep; 40% could choose how to
spend their money on their own.
• About three-fourths of self-respondents (72%) said they Went shopping 88%
had a friend who was not a family member or staff.
However, 41% also reported feeling lonely sometimes. Went out to a
restaurant or 86%
coffee shop

Went out on
Social and community participation matter. errands or 80%
appointments
Adults with ASD report a strong desire for acceptance within
their communities at large,[1] paired with opportunities to
connect with other people who share their common interests. Went out for
entertainment 72%
There is no single level or type of social and community
inclusion that is the right fit for all adults with ASD. People
should be able to participate in their communities and have Went to a religious
meaningful relationships and friendships to the extent that they service or spiritual 38%
choose and in the ways that they prefer. The ACS does not fully practice
capture all the ways that people interact with friends, participate
in their communities or the choices they have in their lives. Source: NCI Adults Consumer Survey 2014-15
However, it does provide some important baseline information
about social and community participation of adults with ASD
who received developmental disability (DD) services.

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 Getting out into the community to do shopping or errands
varied by functioning level. More adults with ASD who had
been shopping in the previous month had mild intellectual In their own voices
disability (ID) (93%), moderate ID (91%), or no ID (90%),
than those with severe or profound ID (81%). More adults Self-respondents were able to answer questions about social
with ASD who primarily used spoken language had been and community participation using yes, sometimes, or no.
out shopping in the previous month (92%) than those who For this In Their Own Voices section, those who answered
primarily used nonverbal communication (82%). A similar sometimes were included as responding no.
pattern was seen in those who had been out on errands in the
previous month (84% of adults with mild ID, 82% of those People with I/DD want to be heard.
with no ID, 80% of those with moderate ID, and 72% of While self-report measures are never flawless,
those with severe or profound ID). they are an important attempt at measuring the
opinions and satisfaction levels of people whose
Almost half (46%) of adults with ASD went away on quality of life may be related to the services they
vacation in the year prior to the survey. Over half of young receive. Results may be influenced by who asked
the questions, how they were asked, who else was
adults (18-24 years) took a vacation compared to one-third in the room, and how well the person understood.
of middle-aged adults (45-64 years). Adults who lived in Despite these concerns, we present self-responses
the home of a parent or relative (54%) or independently for people who reportedly understood the questions
(58%) were the most likely to have been on a vacation in the and gave consistent responses (per the surveyor),
previous year. Those who lived in a group home (39%) or an to honor their voices. Half of the individuals with
ASD in the ACS self-reported information about
institution (18%) were the least likely. their personal experiences.

Young adults with ASD were more likely to Getting around in the community
have been on a vacation in the previous
Adults with ASD who could respond to survey questions on
year than middle-aged adults with ASD.
their own were asked, “When you want to go somewhere,
do you always have a way to get there?” and “How do
18-24 51% you usually get to the places you need to go?” A checklist
was used to record the most frequent ways the person got
around town. (Note: More than one box could be checked).
25-29 50%
Most self-respondents with ASD said they always had a
Age

way to get to where they wanted to go. This did not vary
30-44 47% by age, level of ID, or primary means of expression, and was
similar to the rate for other DD service users who were self-
respondents (85%).
45-64 34%
Percentage of adults with ASD who had been on
vacation in the year before the survey
Having reliable means of transportation is
Source: NCI Adult Consumer Survey 2014-15
important for both employment and
community living.

84% of self-
respondents with
ASD said they
always had a way
to get somewhere
when they wanted
to go.

Source: NCI Adult Consumer Survey 2014-15

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 Nearly two-thirds of self-respondents with ASD said The most common mode of transportation
they usually got a ride from family or friends to get for self-respondents with ASD was getting
to where they needed to go. More than one-third
used rides from staff (in the staff member’s car or in
a ride from family or friends.
a provider van or vehicle), and another third used Ride from
their own form of transportation (e.g., bike, walk, family/friends
62%
drive). Adults with ASD less commonly used public
Ride from staff in
transportation, specialized transportation such as
staff vehicle
37%
paratransit service, or a taxi service.
Ride from staff in
provider vehicle
37%
About 16% of self-respondents with ASD said
they did not always have a way to get to places Walks, drives, or
they wanted to go, or only sometimes had a way. bikes self 30%
Of those, one-third said they needed additional
services (36%); one-fourth citing that they needed Public transit 21%
transportation services (25%). This is important since
having a consistent mode of transportation is key for Specialized
transport 13%
employment in the community.

Young adults who self-responded to survey questions Taxi service 3%

were more likely to get rides from family or friends Percentage of self-respondents with ASD who
(72%) than middle-aged adults (43%). Middle-aged usually used this form of transportation
adults were more likely to get rides from staff in a
Source: NCI Adults Consumer Survey 2014-15
provider’s vehicle (47%) than younger adults (25%).

Decision making and choice of activities Adults with ASD who did not have ID or
ACS participants (or their proxies) were asked, “Who decides had mild ID were more likely to choose
your daily schedule (like when to get up, when to eat, when to their own schedule.
go to sleep)?” (or “Who decides this person’s daily schedule?”) Who chose the person's daily schedule?
Less than half (43%) reportedly decided their schedule for Someone else chose Person had some input Person chose
themselves, while 37% had some help in deciding, and 20%
had no choice about their schedule. Young adults with ASD
were more likely to decide their schedule (46%) than middle- No ID 9% 28% 63%
aged adults (36%). Those who did not have ID or who had
mild ID were more likely to choose their schedule than those
10% 30% 60%
Level of ID

with moderate, severe, or profound ID. Those who used spoken Mild
language were more likely to choose their own schedule than
those who used nonverbal communication. Adults with ASD
chose their own schedule at about the same rate as other DD Moderate 19% 43% 37%
service users.
Severe/
profound
37% 44% 19%

Source: NCI Adult Consumer Survey 2014-15

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 Adults with ASD who primarily used ACS participants (or their proxies) were also asked, “Who
decides how you spend your free time (when you are not
spoken language were more likely to
working, in school or at the day program)?” (or “Who decides
choose their own daily schedule. how this person spends his/her free time?”) Over 40% of adults
Who chose the person's daily schedule? with ASD reportedly could choose what to do with their
Someone else chose Person had some input Person chose spending money (excluding money for rent, groceries, or
other living expenses), while an equal number had some
Primary means of expression

help in deciding, and adults less commonly had spending

Spoken
language
13% 33% 54% choices made for them. Young adults with ASD were more
likely to decide what to do with their spending money (46%)
than middle-aged adults (34%). Nearly two-thirds of adults with
ASD made their own decisions about how to spend their free
time, while one-third had some help in deciding. Others had the
Nonverbal choice made for them.
32% 45% 23%
communication
Only 6% of adults with ASD had no say in their daily schedule,
how they spent their free time, or how they used their spending
Source: NCI Adult Consumer Survey 2014-15 money.

Most adults with ASD had choice in how

they spent their money and their free time.
Who chose each of the following?
Someone else chose Person had some input Person chose

Who decided use of

spending money? 18% 41% 41%

Who decided how to 10% 29% 61%

spend free time?

Source: NCI Adult Consumer Survey 2014-15

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In their own voices
Self-respondents were able to answer questions about loneliness using yes, sometimes, or no. For this In Their Own Voices section,
those who answered sometimes were included as responding yes.

Relationships: Friendships and Family Most self-respondents with ASD (91%) said they had family
they see. Young adults were more likely (95%) to report seeing
Self-respondents were asked “Do you have friends you like to family than middle-aged adults (84%). (Note: If the self-
talk to or do things with?” and “Do you have a best friend, or respondent was living with a parent or relative, they were asked
someone you are really close to?” Nearly three-quarters reported if they had other family members that they saw.)
they had friends who were not staff, and an equal number said Self-respondents were also asked, “Do you ever feel lonely?”
they had a best friend. About 14% of self-respondents with ASD They were able to answer questions about loneliness using
said they had no friends who were not staff and no one they were yes, sometimes, or no. For this question, those who answered
really close to. sometimes were included as responding yes. Forty-one percent
of self-respondents with ASD said that they ever feel lonely.
Self-respondents with ASD who had no ID, mild, or moderate
ID were more likely to report having friends than adults with More self-respondents with ASD who did not have ID said
severe or profound ID. Adults with ASD who used spoken they were ever lonely (44%) than adults with mild (41%)
communication were more likely to report having friends or moderate ID (41%) or severe or profound ID (24%).
(73%) than adults with ASD who primarily used nonverbal Self-respondents who primarily used spoken language were
communication (62%). more likely to feel lonely (42%) than self-respondents who
primarily used non-verbal communication (25%). Other DD
service users who self-responded reported feeling lonely at
about the same rate (37%) as adults with ASD.
Self-respondents were asked whether they
had friends to talk to or do things with.

72% of self-
respondents with
ASD said they
had a friend who
was not family or
a staff member.

Source: NCI Adult Consumer Survey 2014-15

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Self-advocacy Looking Ahead
Adults with ASD (or their proxies) were asked, “Have you ever Please refer to the Looking Ahead chapter for discussion
participated in a self-advocacy group meeting, conference, or of research gaps and next steps for learning more about
event?” (or “Has this person ever attended a self-advocacy group Employment and Other Day Activities and other topics.
meeting or event?”) A self-advocacy group was defined as “where
people with disabilities meet together to talk about things in
their lives that are important to them” and People First was used Reference
as one example. Fifteen percent of adults with ASD had ever
participated in this type of meeting. Nearly three-fourths (74%) 1. Gotham K, Marvin AR, Taylor JL, Warren Z, Anderson CM, Law
PA, Law JK, and Lipkin PH. (2015). Characterizing the daily life,
never had, and 11% lived in an area where they did not have
needs, and priorities of adults with autism spectrum disorder from
access to a self-advocacy group.
Interactive Autism Network data. Autism, epub.

Few said they had ever participated in a

self-advocacy meeting or event.
Percentage of adults with ASD

74%

15% 11%

Yes No No groups in
the area
Participated in a self-advocacy meeting, conference, or event
Source: NCI Adult Consumer Survey 2014-15

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Independence and Rights

Nearly half were legally Information on guardianship came from state records. Almost
half of adults with ASD in the ACS were legally independent
independent. adults, while just over half had a limited or full legal/court-
appointed guardian. Guardianship varied based on race/
ethnicity. Individuals who were white were more likely to have
a limited or full legal guardian. Adults with ASD who did not
Our key findings have intellectual disability (ID) less often had a legal guardian
• Over half (53%) of adults with autism spectrum than those with ID. Those who primarily used spoken language
disorder (ASD) in the Adult Consumer Survey were also less likely to have a legal guardian, compared to those
(ACS) had a limited or full legal (court-appointed) who primarily used nonverbal communication. More adults with
guardian. ASD had a legal guardian than developmental disability (DD)
• Almost three quarters (74%) of adults with ASD could service users with other disability types.
be alone with guests or visitors in their home.

Adults with ASD were more likely to have a

guardian than other DD service users.
Why independence and rights matter
Legal or court appointed guardian
National Core Indicators (NCI) uses surveys like the ACS to No Yes, limited guardianship Yes, full guardianship
track whether people receive the same respect and protections as
others in the community - primarily in regard to their privacy
and legal rights. This final chapter explores the rights of adults
Adults with ASD 47% 13% 40%
with ASD who participated in the ACS and their experiences
with privacy.

Legal guardianship All other DD

service users
59% 10% 31%
Guardianship refers to a legal arrangement in which one
person is given authority over decisions and care for a person
who is deemed unable (incompetent) to make decisions on
their own. There are two types of guardianship asked about in Source: NCI Adult Consumer Survey 2014-15
the ACS: limited and full. Limited guardianship means that
the court-appointed guardian has control over some areas of
the individual’s life – such as medical consent and health care
decisions. Full guardianship refers to a broad decision-making
authority over an individual. The process of establishing
guardianship often requires families to hire an attorney.

Whether a person has a legal guardian or not does not

necessarily correspond with presence of intellectual disability
or other functional impairments, and may have more to do
with individual circumstances and which state a person lives in.
Having a guardian, however, can be associated with outcomes.
For example, people who have a legal guardian are less likely to
have community-based employment.[1]

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 The likelihood of having a limited or full The likelihood of having a limited or full
guardian increased across levels of ID. guardian was highest in adults with ASD
who were white.
No ID 35% White 59%

Mild 47%

Race / Ethnicity
Level of ID

Black 43%

Moderate 56% Other race 43%

Severe/ 66%
profound
Hispanic 40%
Percentage of adults with ASD with a guardian Percentage of adults with ASD with a guardian

Source: NCI Adult Consumer Survey 2014-15 Source: NCI Adult Consumer Survey 2014-15

Adults with ASD who used nonverbal

communication were more likely to have a
limited or full legal guardian.
Primary means of expression

Spoken
language 48%

Nonverbal
communication
62%

Percentage of adults with ASD with a guardian

Source: NCI Adult Consumer Survey 2014-15

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 In their own voices
Independence and rights
People with I/DD want to be heard.
Most self-respondents with ASD (92%) who did not live alone While self-report measures are never
said they had enough privacy at home. Most self-respondents flawless, they are an important attempt at
with ASD (90%) said people always let them know before measuring the opinions and satisfaction
entering their home, and 81% said that people always let them levels of people whose quality of life may
be related to the services they receive.
know before entering their bedroom. This did not vary by age, Results may be influenced by who asked
level of ID, or primary means of communication, and was similar the questions, how they were asked,
to DD service users with other disabilities. who else was in the room, and how well
the person understood. Despite these
concerns, we present self-responses for
people who reportedly understood the
Most self-respondents with ASD had questions and gave consistent responses
enough privacy, and had warning before (per the surveyor), to honor their voices.
Half of the individuals with ASD in the
someone entered their home or bedroom. ACS self-reported information about their
personal experiences.

Had enough
privacy at home
92%

People announced
before entering 90%
their home

People announced
before entering 81%
their bedroom
Percentage of self-respondents with ASD

Source: NCI Adults Consumer Survey 2014-15

Some experienced social independence Looking Ahead

ACS survey participants were asked, “Can you be alone with Please refer to the Looking Ahead chapter for discussion
friends or visitors at your home, or does someone have to be with of research gaps and next steps for learning more about
you?” Almost three quarters (74%) of adults with ASD could Employment and Other Day Activities and other topics.
be alone with guests or visitors in their home. This did not vary
greatly by age, but did vary by level of ID. It was more likely that
adults with ASD who did not have ID were allowed to be alone Reference
with visitors (83%) than adults with mild ID (76%), moderate
ID (73%) or severe or profound ID (68%). Other adult DD 1. Nye-Lengerman K, Narby C, and Pettingell S. (in press). How
is guardianship status related to employment status for people
service users could be alone with guests or visitors in their home
with IDD? Bringing Employment First to Scale series. Boston, MA:
at about the same rate (81%).
University of Massachusetts Boston, Institute for Community
Inclusion.
Most adults with ASD could use the phone or internet whenever
they wanted (89%). Some (14%) sometimes or often had people
read their mail or email without asking.

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What next?... Looking Ahead
Conclusions and • Because adults with ASD often have several health and mental
health conditions in addition to ASD, they often need different
recommendations for future types of help from providers with different areas of expertise.
research These supports may all come from different providers who are
funded through different state agencies. We often hear that
services for people with intellectual or developmental disabilities
As recently as 50 years ago, many adults with developmental (I/DDs) are not well coordinated, and that agencies aren’t
disabilities, including autism spectrum disorder (ASD), lived in reimbursed for collaborating when addressing complex needs.
large institutional settings or were at home but very isolated - shut The importance of interagency coordination is highlighted in
away from society and thought to be incapable of attaining adult the recent Workforce Innovation and Opportunity Act, but few
social roles like having a job, continuing their education or living in measures of interagency coordination regarding service delivery
a place of their choosing. Decades of disability rights advocacy by to people with ASD or I/DD exist. How can we improve the
people with disabilities and their families led to federal legislation, coordination of state DD services with other state and local
legal rulings and changing societal norms. Together, these have services such as Vocational Rehabilitation, mental health,
pushed us toward what President George W. Bush termed a “New health, and special education?
Freedom” - a goal of supporting more people with developmental • It is difficult to reconcile the ACS statistics about high levels
disabilities (DDs) to live and work in their communities. This shift of services satisfaction with anecdotal reports to the contrary.
to community-based inclusion and services has been accompanied There is little research to help us know how well people with
by some positive changes in expectations and outcomes. However, significant intellectual impairment comprehend questions about
today’s services are dispersed services are dispersed across abstract concepts embedded in questions like “Did you help
neighborhoods and providers, and there is no comprehensive or make your service plan?” Nor do we know what helps them
integrated system of collecting data about the supports people need, feel safe and empowered to answer candidly without fear of
the services they end up getting or the results of those services. repercussions for voicing dissatisfaction.
• Many who are potentially eligible for DD services do not get
In this report series, we continue to point to the need for useful the help they need. Many people are on waiting lists. How can
national indicators that can inform the improvement of policies we better understand the needs and outcomes of people who
and practices aimed at helping people with ASD. This National have high enough levels of need that they qualify for services, yet
Autism Indicators Report raises many questions that need further cannot receive them in a timely manner?
investigation. The ACS is just one source of data on these topics
related to services and outcomes. This Report’s findings do not • Some states are just beginning to understand and respond to
always align neatly with findings from other research studies and the fact that many adults with ASD who do not have ID may
data sources. nonetheless have other disabling impairments that prevent their
full participation in the community. State level variation is likely
We conclude this report by noting several significant gaps in related to differences in whether states require adults with ASD
knowledge and priorities for future research: to have an ID in order to be eligible for services. How can we
identify, evaluate and promote emerging state policies that
• A common theme in this report is a discrepancy between appropriately recognize and adequately meet the unique
what we know from other research about how adults with needs of adults with ASD who do not also have ID?
ASD are faring versus the statistics derived from the Adult
Consumer Survey (ACS) data. For example, a study of the
We believe that people with ASD are valuable members of our
medical records of approximately 1,500 people on the autism
communities. We urge the creation of a better system of population-
spectrum found high rates of poor health and complex medical
level indicators that can track whether our nation is making
needs that are not well managed.[1] The ACS data in this report
meaningful progress to help people with ASD achieve social roles
also found high rates of medication and also co-occurring health
and fulfill their potential to be contributing members of society.
and mental health conditions. However, the self- and proxy-
report ACS data suggests many adults with ASD are in very good
to excellent overall health. Further research is needed to reconcile
these kinds of discrepancies and to better understand the health
and health care experiences of DD service users. Reference
• The bulk of public funding for the services people with ASD say 1. Croen LA, Zerbo O, Qian Y, Massolo ML, Rich, S, Sidney S,
they need comes through local and state DD agencies. We still and Kripke C. (2015). The health status of adults on the autism
know very little about which types of DD services work best spectrum. Autism 19(7): 814-823.
for whom, or which related state policies result in the best
outcomes.

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Appendix: Methods

Data sources Many states chose who participated in the ACS based on the
types of funding people received for services. For example, Utah
What data did we use for this report? randomly sampled adults who received Medicaid Home and
Community Based Supports (HCBS) or Intermediate Care
Data for this report came from the National Core Indicators Facilities for Individuals with Intellectual Disabilities (ICF/ID)
(NCI) Adult Consumer Survey (ACS) 2014-15. NCI is a project supports. Other states included only certain types of HCBS
of the National Association of State Directors of Developmental waiver participants, or excluded individuals receiving certain
Disabilities Services (NASDDDS) and the Human Services funding types, like ICF/ID supports. Furthermore, some states
Research Institute (HSRI). The primary purpose of NCI data did not include consideration of participation of these waivers
collection is to help states track their performance on key indicators at all when they selected their sample. Additionally, two states
of performance and compare their progress to other states. (California and New Hampshire) did not collect information
about HCBS funding receipt in the 2014-15 ACS, so those
The ACS is a survey performed annually by a subset of NCI states individuals for these states were not included in the indicators
who choose to participate. In survey year 2014-15, 31 states, one presented in the Services chapter regarding receipt of HCBS
regional council, and Washington DC participated. Surveys were funding or use of self-directed supports options.
completed between July 1, 2014 and June 30, 2015. Sampling was
conducted based on those receiving services during this timeframe. Understanding outcomes for groups
There were two comparison groups in this report. The first group
Adults with intellectual disability (ID) or developmental disability
was composed of individuals who had a recorded diagnosis of ASD
(DD) were eligible to participate if they received at least one service
in their state records. The second group was individuals with other
in addition to case management from the state developmental
types of intellectual or developmental disabilities (I/DDs) other than
disability (DD) agency. States that participated in the ACS targeted
ASD. Both groups were limited to working-aged adults who were
a random sample of adult service users to interview, aiming for
not in public school at the time of the survey.
a minimum of 400 participants per state. Additional sampling
information is available in the ACS 2014-15 report at www.
nationalcoreindicators.org.

How was the data collected

and evaluated?
Who is this report about?
Recall that the information from the ACS is collected in three parts:
Who was included in this report? • Background section - Information gathered from state records
This report presents indicators for individuals with autism by a survey administrator who did not know the participant.
spectrum disorder (ASD) who used state DD services and who Example topics include health and mental history, where the
were no longer secondary school students. These individuals all person lives, recent employment history, and services received.
had ASD noted in their state records, and participated in (or had • Section I - A series of subjective questions about satisfaction levels
a proxy participate in) at least one section of the survey. or personal experiences that can only be completed by the adult
service user in a face-to-face interview. Example topics include
satisfaction with one’s employment and living arrangement,
privacy and safety.
• Section II - A combination of objective and subjective questions
completed by the adult service user if possible, or a proxy
respondent if the individual was unable to participate on their
own. Example topics include access to needed services, how
the person spends their leisure time, and opportunities to make
choices in one’s life.

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Survey questions were answered directly by the individual with ASD
when possible. Otherwise, information came from proxy reporters -
Data analysis
people who knew the individual and could report answers. We presented descriptive data for key indicators in this report. We
used percentages, means, and medians to convey how often and
to what extent characteristics, experiences, and outcomes happen.
Following NCI analysis procedures, survey responses were
Unlike scientific journal publications, we did not perform tests
considered invalid IF:
of statistical significance for this report. However, we reported
• A person had background information that was filled in from a differences that had practical significance.
review of state records, but had no answers to survey questions.
None of these people were included in our analysis.
• No questions were answered in section I. These people were Handling missing data
excluded from analysis of questions gathered in section I. There were instances of missing data from the ACS, and instances of
• The surveyor noted that the person did not seem to understand don’t know responses. For this report, most don’t know responses were
the questions or give consistent and valid answers in section I. set to be missing. In these cases, missing values were not considered
These people were excluded from analysis of questions gathered in the denominator. Where relevant, we reported the percentage of
in section I. don’t know responses.
• No questions were answered in section II. None of these people
were included in our analysis. The proportion of the total ACS population who had a specific
If a self-respondent’s answers in section I were deemed invalid disability was calculated based on the entire ACS population that
because the person did not seem to understand the questions or had at least one type of developmental disability listed. Those who
give consistent answers, and they did not have a proxy respondent had missing information on all disability categories were excluded
for section II, then their responses to section II questions were also from the denominator when calculating percentages.
deemed invalid. None of these people were included in our analysis.
State differences
We did not include responses in our analyses if they were deemed
invalid. Some indicators were missing information from some states. These
are noted throughout the report. Missing information must be
considered when interpreting the results for these states.
Validity of proxy reports • There was no information about the use of self-directed supports
or Medicaid waivers for ACS participants from the state of
We note here that questions exist about the accuracy of proxy California. California did not offer self-directed support option
reports in DD research,[1-4] and research efforts are underway to at the time of this survey. Medicaid waiver information was
better understand how to best gather information regarding people collected differently in California.
with significant difficulties participating in surveys. We don’t know
• New Hampshire conducted the ACS on a two-year cycle,
the extent of knowledge a proxy had regarding the individual they
and for this administration of the ACS, they used the survey
were representing, and it is likely that there were differences in the
instrument that was administered in the 2013-14 administration
quality of proxy respondents. Some proxies may have an intimate
cycle. For that reason, they did not have information on some of
knowledge of the person they are reporting about, while others
the questions presented in this report.
may not have known an individual well enough to answer some
questions. In general, caution should be used when interpreting • A little over one-third of the adults with ASD in the Delaware
proxy reports, since we cannot assess the validity of answers given sample were missing information on student status. We did
by a proxy. In the absence of guidelines for how to handle these not include these individuals in our analysis, because we only
issues, we chose to handle these concerns by reporting results from included those who responded that they were not a public school
all questions answered by proxies, as is standard for how NCI student at the time of survey administration.
reports results.

Reliability
While NCI has designed a standard process for ACS interviews,
there may have been differences in how interviews were conducted
across states and across interviewers.

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How our analyses differ from • Adults were coded as having ASD based on notations in state
DD service records. Diagnoses were not clinically verified, and
other ACS publications notation of ASD may have been less likely for middle-aged
adults. It is possible that more adults in the ACS had ASD than
Estimates from this report may not exactly match estimates was identified via state records.
produced by NCI or other researchers. Official reports from NCI
present statistics calculated using an “average of averages” approach • We were unable to examine how services and outcomes were
which first averages data for participants within a state, and then related to household income as this was not measured in the
averages these state-level average numbers across participating states. survey.
This method is used so states can compare their results to a summary
total that is not swayed by states with a large number of participants. The general limitations of surveys apply here as well. The ACS relied
For purposes of this report, we calculated point estimates by on recall of events that happened over the previous year, which may
averaging all ACS participants, and did not perform an average of have been difficult for some participants. Furthermore, the method
the averages. We chose not to present an average of averages because of interviewing individuals with ID was not fully described, and
the main goal of this report was to produce indicators of adults therefore, may not have been easily replicable.
with ASD across all participating states. Unlike the NCI reports, we
did not aim to help state DD agencies compare their performance
against other states. However, for informational purposes, we did The Consent Process
present state averages in the maps in each chapter.
The process of consent for adults who participated in this survey
varied by state. The ACS was designed as a quality assurance
To learn more about NCI and the ACS, visit the NCI website at measure - not as a research tool. Administration was subject to state
www.NationalCoreIndicators.org regulations regarding consent for participation - not university IRB
regulations. Consent processes were only approved by an IRB in
states that contracted with a UCEDD for survey administration.

Strengths and Limitations References

The ACS provides a sizeable dataset with participants from many 1. Stancliffe, RJ. (2000). Proxy respondents and quality of life.
states including a large number of adults with ASD. The inclusion of Evaluation and Program Planning: 23, 89-93.
adults with ID or a DD who require assistance to participate in the 2. Schalock et al. (2002). Conceptualization, measurement, and
survey is an additional strength. The ACS also contains information application of quality of life for persons with intellectual disabilities:
about rights and decision making, which is not often assessed in Report of an international panel of experts. Mental Retardation:
large surveys despite their importance. 45(6), 457-470.
3. Emerson, E., Felce, D., & Stancliffe, R. J. (2013). Issues concerning
There are several limitations to use of ACS data that are important self-report data and population-based data sets involving people with
intellectual disabilities. Intellectual and Developmental Disabilities,
to note.
51(5), 333-48.
• Regulations for DD services and programs differed by state and
4. Li, C., Tsoi, E. W., Zhang, A. L., Chen, S., & Wang, C. J. (2013).
may affect the averages we present for adults with ASD. Psychometric properties of self-reported quality of life measures for
• Findings were not nationally-representative as not all states people with intellectual disabilities: A systematic review. Journal of
participated in the survey. Developmental and Physical Disabilities, 25(2), 253-270.
• States were asked to draw a random sample for participation in
the ACS, but it was left to each state to decide how to do this and
some of the samples are not truly random. Therefore, the samples
from each state may not have been truly representative of all
adult DD service users in that state.

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 A.J. DREXEL AUTISM INSTITUTE, DREXEL UNIVERSITY

Life Course Outcomes Program

A.J. Drexel Autism Institute
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Philadelphia, PA 19104-3734
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