3 0 Yea rs ofCommunity Living
for Individuals with Intellectual and/or
Developmental Disabilities (1987-2017)

The Administration for Community Living has
funded three longitudinal data projects of nationalsignificance for nearly 30 years. Those projects
study where people with intellectual and/or
developmental disabilities (ID/DD) live, if andwhere they work, and how public money is spent on
supports. They report on the current status of those
supports and on trends over time. This book reviews
30 years of data from state ID/DD agencies aboutcommunity supports for people with ID/DD.
The Residential Information Systems Project (RISP) isa project of the Institute on Community Integration
at University of Minnesota. It studies 1) how many
people with ID/DD get paid supports, 2) the types
and sizes of the places where people live, 3) how
services differ for children and adults, and 4) how
services change from year to year. RISP data areused for the Community Living chapter.
StateData.info is a project of ThinkWork! at theInstitute for Community Inclusion at UMass
Boston. StateData and ThinkWork! describe
employment experiences of people with ID/DD
and other disabilities, describe policies andsupports that lead to employment and othermeaningful day activities, and tell personal stories
about employment success. StateData research isused in the Employment chapter.
The State of the States in Intellectual andDevelopmental Disabilities Project is run by the
University of Colorado at the Anschutz Medical
Campus. It studies 1) how much money is spent on
supports for people with ID/DD, 2) how services
are funded, and 3) how technology changes
people’s lives. State of the States data are used in
the Expenditures and Technology chapters.

2 | 30 Years of Community Living | acl.gov/30years

Introduction
No one is too
disabled to live
and work in thecommunity.
– Nicole LeBlanc
3 | 30 Years of Community Living | acl.gov/30years

Community living became a reality for manyin the last 30 years
Live where you want. Choose who you live
with. Earn money at a job you enjoy. Eat when
you want. Choose how to spend your free
time. Decide how you will spend your money.
These basic personal freedoms are denied
to too many people with intellectual anddevelopmental disabilities (ID/DD) who get
paid supports.
How many people have ID/DD? How
many people get supports and services
through state ID/DD agencies? Where
do they live and work and at what cost?
How can technology make people’s lives
easier and better? This book tells about the
supports people with ID/DD get at home,
at work, and in the community. It also tells
how supports are paid for.

4 | 30 Years of Community Living | acl.gov/30years

What is an Intellectual Disability?
What are Developmental Disabilities?
This book describes supports for people
with intellectual and/or developmental
disabilities. Many people who havean intellectual disability also havedevelopmental disabilities. But not
everyone with a developmental disability
has an intellectual disability. In this book,
ID/DD refers to people with an intellectual
disability, developmental disabilities, or both.
People with developmental disabilities (DD)may have difficulties with things such as
speaking, learning, caring for themselves,moving around, making decisions, living
independently, and making and managing
money. Their difficulties start before age
22. They continue throughout life, and aresevere enough that the person needs ongoing supports.

5 | 30 Years of Community Living | acl.gov/30years

Intellectual disability (ID) begins before
age 22. People with ID have trouble
learning and solving problems. They also
have difficulties with practical skills suchas dressing or shopping, social skills suchas making and keeping friends and keeping
others from hurting them, and with skills
such as reading and doing math.
Data Source: Developmental disability was defined in
the Developmental Disabilities Act of 2000. Intellectual
disability was defined by the American Association
on Intellectual and Developmental Disabilities in
2021. States ID/DD agencies may use these or otherdefinitions to decide who is eligible for services.

About 7.38 million people in the U.S. haveintellectual and/or developmental disabilities.
7 in 10 people with ID/DD are children

In the United States, about 2.3% of the people have ID/DD. About 7 in 100 children have
ID/DD. Some children no longer have significant disabilities by the time they are adults. Fewerthan 1 in 100 adults (0.78%) have ID/DD.

Less than 1 in 5
people with ID/DDof all ages (17%) get
paid supports.

notreceivingsupports

receivingsupports

State ID/DD agencies provide publicly funded
supports for 1.28 million people with ID/DD.

Most people served by state
ID/DD agencies are adults.
62% of people supported by state ID/DD
agencies are adults. All children get afree public education, some get supports
from public agencies such as child welfare
instead of from state ID/DD agencies.
Data Source: RISP

6 | 30 Years of Community Living | acl.gov/30years

For almost 100 years
parents were told tosend their children with
ID/DD to institutions
for care.
Doctors and teachers told parents that
institutions were the best place for people
with ID/DD to live, learn, and be safe. But
many families kept their children at home.
Many professionals believed that people
with ID/DD could not learn, hold a job, orlive with their families.

But institutions were
miserable places to live.
Many people entered ID/DD institutions
as young children. Most never left. Manygot diseases that spread from person toperson. Between 1880 and 1967, thenumber of people living in state ID/DD
institutions increased from 2,429 to
194,650. In 1967, almost half of thepeople in ID/DD institutions were children.
In 1965, Senator Robert F. Kennedy visited
Willowbrook State School, one of morethan 370 state ID/DD institutions. He
called it an overcrowded, filthy, “snake pit.”
President John F. Kennedy responded asparents and the public demanded changes.

7 | 30 Years of Community Living | acl.gov/30years

Institutions started
getting smaller andbegan to close in
the 1960s.

In 1963, Congress passed a law (now known as
the Developmental Disabilities Act) to improve
the lives of people with ID/DD. The Protection
and Advocacy System was created to support thelegal and civil rights of people with disabilities.
In 1971, Medicaid began paying for care in
institutions with improved living conditions.
Also in 1971, the Supplemental Security Income
program began. In 1975, Congress passed a law
requiring that a free education be available toall children with disabilities. In 1981, Medicaid
dollars became available as an option for states
to pay for supports for people living with a family
member or in a community home.

194,650

Number of People in Institutions

The number of people with ID/DD in institutions
dropped as people moved to community homes.
Between 1967 and 2017, the number of people
with ID/DD living in state-run institutions dropped
from 194,650 people to 18,807 people.

1952

18,807
1957

1962

1967

1972

1977

1982
Year

8 | 30 Years of Community Living | acl.gov/30years

1987

1992

1997

2002

2007

2012

2017

“Any time you segregate
anybody away from thecommunity it’s still like being
in an institution. An institution
is any place you do not havecontrol over your life or makeyour own decisions.”– Tia Nelis“I went to a place called
Grafton State School. I lived
there for over 30 years. It
was hard work there. We
couldn’t go places when wewere younger. We had tostay mostly on the wards...
There was a lot of work
scrubbing floors on ourhands and knees.”- Helen Bechold

9 | 30 Years of Community Living | acl.gov/30years

Public policies changed
to support community
participation.

10 | 30 Years of Community Living | acl.gov/30years

New laws and public policies madecommunities more welcoming places forpeople with ID/DD to live, work and thrive.

Communities are better
Being included means living
when everyone is included. and working with family,
friends and neighbors.
Some people want to keep institutions forpeople with ID/DD open or to create new
ones. Research tells us that people with
ID/DD who live alone, with their family
or with a few other people have morechoices, do more in their communities andhave better lives than those in institutions.
When large groups of people with ID/DD
live together, they have fewer choices
about their schedule, meals, andactivities. Most adults with
ID/DD want to choose
the people they live with.
Many want to live inhomes of their own.

People with ID/DD want to work. But
most spend their days at home or ina day program. Few have jobs earning
minimum wage or more. Few work in
integrated community settings.
Working gives people money to buy
things and do things they enjoy. It
helps them learn new skills andmeet new people. It provides
a place away from home to dosomething important.

EMPLOYMENT...
connects people

11 | 30 Years of Community Living | acl.gov/30years

is a path to opportunity

means equity

Between 1987 and 2017 life got
better for many people with ID/DD.
1. Four of every five people with ID/DD
who lived in an institution in 1987
moved to a community home by 2017.

2. Medicaid spending on people with
ID/DD increased by three and a halftimes (from $15.7 billion to $55.3 billion
in 2017 dollars).

$55.3
billioninstitutions

community homes$15.7
billion1987

2017

3. The number of people with ID/DD
supported to work in community jobs
increased from 33,000 to 135,000.

1987
2017

33,000135,000

4. The number of people with ID/DD getting Medicaid-funded supports in home andcommunity-based settings exploded from 22,869 people to 860,500 people.

1987

22,8692017
Data Sources: 1 - RISP, 2 - SOS, 3 - ThinkWork!, 4 - RISP

12 | 30 Years of Community Living | acl.gov/30years

860,500

People who live in different states
have different opportunities.
Each state makes different choices about
how to use tax dollars to pay for supports
for people with ID/DD. Some states collectvery little in taxes while others collectmore. The amount of money spent on
supports for people with ID/DD is different
in each state.

13 | 30 Years of Community Living | acl.gov/30years

In some states, nearly everyone with
ID/DD who get supports lives with a family
member. In other states, most adults with
ID/DD who get supports live in their own
home or in small group settings. In somestates, most adults with ID/DD getting
supports work in a community job. In otherstates, very few people with ID/DD get
supports to work in community jobs.

People with disabilities deserve to live in thecommunity without being segregated. When weare included, people see what we have to offer.
- Max Barrows

Living in the Community
14 | 30 Years of Community Living | acl.gov/30yearsLiving a DreamAmy lived with her family until she was 23
years old. After living in a group home forthree years, she wanted more.
“I moved into my own apartment right before
Halloween [in October]. It’s awesome. I loveit,” she says. Some changes were made to herapartment so it was accessible, allowing her
to live alone.
“The staff come when I need them to.
I just call on my cell phone.” She got alandline to avoid using up her mobile
phone minutes. “Which I already did,” Amyquips. Like all young people, she learned
from a few early mistakes.
Amy’s mother worried about Amy feelingisolated living alone, but that hasn’t been aproblem. “What I like best is going to see myfriends when I want to and I can come here
when I want peace and quiet,” Amy said.
15 | 30 Years of Community Living | acl.gov/30years

Amy and herbrother

Amy works full time, doing packaging
and assembly work, and enjoys it. She
now feels ready to try something morechallenging. “I can see myself doing
something a little bit more independently,”
she says.
Amy is thinking about marrying her
boyfriend – a dream her mother thought
would never happen. “In the last year she
was at home she was very anxious to[move out],” her mother said. We learned
that “You have to do your homeworkand find a good provider. It doesn’t
happen automatically,” she said, but “withperseverance, high expectations for full
adult lives…, and talking with other parents,
it can happen.”Most people with
ID/DD live with family
members for their whole
life. Only some getfunded supports.

In 2017, of the people getting funded
supports, 58% lived with a family member,
12% lived in their own home, 5% lived witha host or foster family, 16% lived in a grouphome shared by six or fewer people, and
9% lived in an institution of seven or more
people (5% lived in an institution with 16
or more people).

9%

Institution | a residence of seven or more
people owned, rented, or managed by theorganization or agency that provides
services to people in the facility

58%

16%

Family Home | aresidence sharedby a person with
ID/DD and theirrelated family
members.

Group Home | a residence of six or
fewer people owned, rented or
managed by the organization or
agency that provides services to thepeople in the home5%

Host or Foster Family Home | a home
owned or rented by an individual or family
that provides supportive services to one ormore people with ID/DD
16 | 30 Years of Community Living | acl.gov/30years

12%

Own Home | a home
owned or rented by one
or more adults with ID/DD

The number of people with ID/DD getting paid
supports doubled between 1998 and 2017.
As the Medicaid Home andCommunity-Based Supports
Waiver program got bigger, many
more people with ID/DD were able
to get paid supports.

1998
693,6912017
1,319,819

Among people with ID/DD getting supports, children aremuch more likely than adults to live with a family member.

85%of children lived witha family member

17 | 30 Years of Community Living | acl.gov/30years

42%of adults lived witha family memberBy 2017, only 1 in 4 people with ID/DD who got
supports lived in a group setting.
Between 1998 and 2017, the percentage of people getting support who lived with afamily member went up from 47% to 58%. The percentage living in their own home went
up from 9% to 12%. The percentage living with a host or foster family went up from 4%
to 5%. The percentage living in a group home or ID/DD institution went down from 36%
to 23%. The percentage living in a nursing home or psychiatric facility went down from
4% to 2%.

1998

2017

Family home

325,650 (47%)

11%762,097 (58%)

Own home

62,669 (9%)

3%152,759 (12%)

Host/foster family home

28,122 (4%)

1%

67,649 (5%)

Group settings (all sizes)

250,490 (36%)

13%

308,939 (23%)

Nursing home or
psychiatric facility

27,760 (4%)

2%8,375 (2%)

18 | 30 Years of Community Living | acl.gov/30years

The number of people getting supports who
did not live with a family member doubled.
The number of people with ID/DD getting
paid support who did not live with afamily member increased from 255,673 to
516,505 between 1987 and 2017.

1987
255,673 people
2017
516,505 people

19 | 30 Years of Community Living | acl.gov/30years

By 2017, most people with ID/DD not living witha family member shared a home with 6 or fewer
people with ID/DD.
The percentage of people
with ID/DD not livingwith a family member who
lived in homes shared bysix or fewer people with
ID/DD increased from 1 in
4 (27 percent) in 1987 to 4
in 5 (83 percent) in 2017.
The number of people with
ID/DD living in homes
shared by six or fewer
people with ID/DD grewfrom 69,933 in 1998 to
427,947 in 2017.

20 | 30 Years of Community Living | acl.gov/30years

In 1987, 9 of 10 people with ID/DD getting
Medicaid-funded supports lived in an institution.
Today, 9 of 10 people getting Medicaid-funded
supports live in the community.
The number of people with ID/DD living in a Medicaid
Intermediate Care Facility for Individuals withIntellectual Disabilities (ICF/IID) dropped from 145,162
in 1987 to 73,856 in 2017. The number of people
with ID/DD getting Medicaid Home andCommunity-Based Supports (HCBS)
Waiver funding increased from
22,689 to 860,500.

860,500
HCBS

Community

145,162
73,856 ICF/IID

Institution

22,689
1987

1997

Most adults with ID/DD do
not get services from state
ID/DD agencies.

21 | 30 Years of Community Living | acl.gov/30years

2007

2017

About 2.2 million adults in the
United States had ID/DD. About
4 in 10 were on ID/DD agency
caseloads. About 3 in 10 got
Medicaid HCBS funding. But
only 4 in 100 lived in an ICF/IID,
a nursing home, or a psychiatricfacility. The rest got supports
funded by other sources or got
no paid supports.

By 2017, 17
states had
closed all of theirlarge state-run
institutions forpeople with
ID/DD.

The number of state-run ID/DD institutions went from
224 in 1987 to 119 in 2017. Between 2015 and 2020, an
average of 8 state-run institutions closed each year. Stateswith no state-run institutions for people with ID/DD
in 2017 were Alabama, Alaska, the District of Columbia,
Hawaii, Indiana, Maine, Michigan, Minnesota, Montana, New
Hampshire, New Mexico, Oklahoma, Oregon, Rhode Island,
Tennessee, Vermont and West Virginia.
But, 103,983 people with ID/DD still lived in nursing
homes, psychiatric facilities, or group facilities shared by 7
or more people with ID/DD in 2017.

22 | 30 Years of Community Living | acl.gov/30years

Community Employment
I don’t just work to havea job, I work to live.
- Ashley Wolfe

23 | 30 Years of Community Living | acl.gov/30years

Maggie’s Story
Maggie works as an office manager’s assistant at
AMP Agency. AMP helps well-known businesses
like Hasbro, Princess Cruises, Samsung, andBoden with their marketing. Maggie, together
with her employment specialist and AMP’s Office
Manager, carved out a job that interested her
and benefited AMP.
Maggie had a part-time job in a bakery, but she
wanted a job doing office tasks for an interesting
company. With help from her employment specialist,
Maggie began looking for these type of jobs. This was
how she found out about the opportunity at AMP.
Maggie is a fast learner who enjoys working in thecreative environment at AMP. She works at AMP
four hours a day, three days a week and has anotherpart time job at a grocery store. The managers are
happy with Maggie’s punctuality, positive attitude,
and work ethic. Maggie accomplishes many
important tasks at AMP and her coworkers can’t
imagine the company without her.
At AMP, Maggie enters contact information fromclients’ business cards into a computer. She also
sends and receives packages and other mail, makes
copies, shreds paper, stocks supplies, makes coffee,
and keeps the kitchen and conference rooms clean.
Maggie’s duties are organized so that she does
all her kitchen tasks at a certain time, office tasks
at another time, and supplying tasks at anothertime. This way, people know when Maggie will
be working in each area. However, tasks may be
more or less important, depending on the day. So
Maggie has to pay attention to the tweaks that her
employment specialist makes to her task list.
Maggie at work

24 | 30 Years of Community Living | acl.gov/30years

Jobs are an important part of life.
Working allows us to contribute to our communities.
Having a job means we have our own money. Having
money allows us to make choices about things that areimportant. Jobs also give us purpose, help us build skills,
and provide a pathway to connect with others.

Competitive integrated
employment is the term
used to describe a good job.
In a competitive integrated job, a person works for a local
business, earning a regular wage alongside coworkers who
do not have disabilities. The person may get help to find or
keep the job, but the business they work for is not paid toprovide supports to the person.

25 | 30 Years of Community Living | acl.gov/30years

It is important tobe part of yourcommunity when
you are not working.

26 | 30 Years of Community Living | acl.gov/30years

Community life engagement is being part ofyour community when you are not working.
This may include volunteering, taking classes,
going to religious activities, going to the gym, or
doing other activities people with and without
disabilities do together when they are not working.
Sometimes people get paid supports to help themplan and get to these activities.

Some people spend
their day in activities
that are more like
programs than jobs.

People are not fully partof their community when:

Some people with ID/DD have jobs thatare not integrated in the community.
These jobs often pay less than minimum
wage, and most of the workers havea disability. Often the person with thedisability receives their paycheck fromthe organization that is paid to help them.
Sometimes these programs are calledsheltered workshops.

3. The employer is also paid to provide
supports.

“Not being part of thecommunity is a humanrights issue.”- Max Barrows

27 | 30 Years of Community Living | acl.gov/30years

1. Their job pays less than minimum wage.
2. Most coworkers have a disability.

4. Activities are chosen because the groupis going.
5. Everyone doing the activity gets
supports.
6. You go places without knowing why.

Only 1 person in 5 getting
employment or day services
from a state ID/DD agency
gets support to work in an
integrated job.

Of the 641,608 people with ID/DD
who got any employment or day
service in 2017, only 130,402 got
integrated employment services.
Data Source: ThinkWork! IDD Survey, 2017any employment
or day service

641,608integrated
employment
service

130,402

Many people with
ID/DD want to work
but do not have a job.
Do not have a job

Research shows us that people with ID/DD wantcommunity jobs but do not get help to make thishappen. Only 1 in 5 people with ID/DD have apaid, integrated job. Listening to people means
helping those who want to work to find a job.

Have a job
8 out of 10 people (80%) with ID/DD do nothave a paid job in the community.

Want a job

Don’t want a job
4 of those 8 people (48%) want a job in
the community

Have goal

No goalOf those 4, fewer than 2 people (40%) havea goal to get a job in the community documented
in their Individualized Service Plan
Data Source: National Core Indicators, 201728 | 30 Years of Community Living | acl.gov/30years

Most people with paid, integrated jobs have an
individual job but some work in small groups ofpeople with disabilities.

group
supportedjob

25%

About 75% of people worked in an
individual job, and 25% worked in a small
group job often called a mobile workcrew or enclave. Small group jobs
are in the community and can bepart of a short-term pathway
to employment, but are notcompetitive integrated jobs
and they may pay lessthan minimum wage.

75%
People with individual
jobs work more hours
and earn more money.
People in individual jobs worked an averageof 13 hours, and earned about $117 per
week ($8.90 per hour). People in group jobs
worked an average of 12 hours and earned
about $70 per week ($5.60 per hour).
People need help to find jobs that pay atleast minimum wage and offer more hours.
Data Source: National Core Indicators, 201729 | 30 Years of Community Living | acl.gov/30years

individual job

$117
per
week
$70
per
week

Group job

Individual job

Integrated employment is increasing and shelteredwork is decreasing. However, most people do nothave community jobs.
Between 1990 and 2017, the number ofadults with ID/DD in employment or day
supports grew. The number of people inintegrated employment grew from a few
thousand to nearly 150,000. The numberof people working in sheltered workshops
went down, especially in the last few years.

The number of people getting day
supports grew the most. Day supports
are sometimes called non-work supports.
When people are getting day supports they
do not earn money. Day support activities
can take place in program settings or in thecommunity. Typically, people with ID/DD
getting day supports are grouped together
because of their disability instead of by
their common interests or goals.

700,000

total 641,608

Number of People

600,000
500,000
non-work

400,000
300,000
200,000

facility-based
work

100,000

integrated
employment

0

1990

1996

2004

Year
Data Source: ThinkWork! IDD Survey, 201730 | 30 Years of Community Living | acl.gov/30years

2012

2018

Participation in integrated employment varies by state.
The state where you live matters.
Nationally, about 1 of 5 people with ID/DD
who get an employment or day service aresupported to find or keep a community job.
But the number varies by state, from fewer
than 1 in 50 people to 43 in 50 people.

State ID/DD agencies' policies have astrong impact on whether or not someone
gets supports to help them find and keep acommunity job.
The good news is that we know thechanges that state ID/DD agencies canmake to support more people to work in
the community.

Percent of people in integrated employment by state
90%
80%
70%
60%
50%
40%
30%
U.S.
average

20%
10%

State
Data Source: ThinkWork! IDD Survey, 201731 | 30 Years of Community Living | acl.gov/30years

State policies about
employment make adifference.
Employment First means that employment
in community jobs should be the first
option for individuals with ID/DD. All
citizens, including people with significant
disabilities, can participate in integrated
employment and earn real wages.
States with Employment First policies
support employment as the goal for young
adults leaving school and adults needing
employment or day support. People withdisabilities living in those states are more
likely to have integrated community jobs.

32 | 30 Years of Community Living | acl.gov/30years“Employment First means
people with disabilities,
people of all abilities, needto have a purpose in life. We
all have amazing potential
to pursue a purpose in life
if given the opportunity.
Employment First is about
making that your top tiergoal in life and really striving
to get a job and be a part ofyour community.”- John Fenley,
People First of
New HampshireStates that support
more people to work in
integrated jobs have clear
policies and strategies
that support work.
More people with ID/DD have jobs instates that make employment a priority.
Those states focus on supporting
integrated jobs in policy, services, funding,training and capacity building, andoutcome measurement. We call thesestates high performing states. In highperforming states, agencies like Vocational
Rehabilitation and Education partner with
ID/DD agencies to get better results. Highperforming states also have leaders whovalue integrated employment.

The High Performing States Model

Catalysts
leadershipvaluesStrategy
Policy & goals
FinancingTraining & TA
Service innovation
Outcome data

Integrated Jobs

INTERAGENCY COLLABORATIONHall et al, 200733 | 30 Years of Community Living | acl.gov/30years

Put your money
where your mouth
is. Are you going toinvest or not?
- Julian Wang

Expenditures

34 | 30 Years of Community Living | acl.gov/30years

Amy’s Story
Fear gripped Amy Grimm’s family when
they heard the 2012 announcement that
the Northern Virginia Training Center(NVTC) would close in 2016. NVTC had
been Amy’s home since 1975. Her family
felt it was the only place she could live
safely due to her support needs.
In 2016, after planning and preparation
with The Arc of Greater Prince William
County, Amy moved into a home with threeroommates near her family using funding
from Virginia’s Community Living Waiver.
Her family’s fear, anxiety and terror slowly
turned into relief and confidence. “Her life
opened up completely once she moved,”says her sister, Laurie. “She loves having
her own room, is proud of her house,
she has had dates, uses an iPad, goes toshows, movies, and loves shopping every
week.” Waiver funding also supports
Amy’s day program where she does art
and music therapy.
Amy attends family events and othercommunity parties that were rarely
possible when she was at NVTC. “Livingin the community has been awesome forAmy,” says Laurie. “Her life has improved
more than I ever thought was possible
and every day I am grateful for the
wonderful staff and all the opportunities
she has now.”

35 | 30 Years of Community Living | acl.gov/30years

studying how public money is
Spending for individuals Researchers
spent to support people with ID/DD reportwith intellectual and/orthat since 1977, total adjusted spending
every year except for 2011 anddevelopmental disabilities increased
2014. Total spending was highest in fiscal
increased over time.
year 2017 at $71.7 billion dollars.

Total ID/DD Public Spending$71.7 billion$59.9 billion$44.5 billion$27.4 billion$16.4 billion

1977

1987

1997
Fiscal Year

2007

2017

In 2017, most supports were funded by Medicaid.
Medicaid programs for people with ID/DD include the Home and Community-Based Services(HCBS) Waiver and Intermediate Care Facilities for Individuals with Intellectual Disabilities(ICF/IID). Medicaid HCBS Waivers fund supports and services provided in community
settings. HCBS services can include residential supports, employment supports, home
modifications and other types of supports. ICF/IID services are provided in institutions.

77%

Medicaid
spending

36 | 30 Years of Community Living | acl.gov/30years

23%

other
spendingSpending has shifted frominstitutions to communities.

$64.4 billion

Spending on services provided to people living
in institutions decreased from 12.3 billion in1977 to $7.2 billion in 2017. But spending onservices provided to people in community settings
increased from $4.1 billion to $64.4 billion.

$12.3 billion$7.2 billion$4.1 billion
1977

1989

2017

In 1989 community spending
surpassed institutional spending andcontinued to increase up to 2017.

In 1989, community spending
exceeded spending on
institutions.
Until 1989, the government spent more money onservices in institutions. Since 1989, more money
has been spent on services in community settings.
In 2017, 90% of all spending on services forpeople with ID/DD was for services provided incommunity settings.

37 | 30 Years of Community Living | acl.gov/30years

The amount of money states spend
on supports and services varies.
To compare the amount of money that states spend on
services and supports for people with ID/DD, researchers
use a measurement called fiscal effort. This measurement
lets us compare states with one another, even though they
have different policies and state wealth.
Average fiscal effort for the United States in 2017 was$4.40. Some states spent as little as $1.62 per $1,000
of income while others spent as much as $11.65 per$1,000 of income.

Fiscal effort is theamount of money spentby the state and federal
government on ID/DD
supports and services
per $1,000 of statewide
personal income. In
other words, how mucha state spends on ID/DD
services considering
state wealth.

Total ﬁscal effort for 2017$1.62-$3.50
ﬁscal effort$3.51-$5.00

38 | 30 Years of Community Living | acl.gov/30years$5.01-$6.50$6.51-$11.65

Virginia's story shows how
state policy affects spending.

SED

CLO

After the 2012 investigation of Virginia’s public state-run
institutions for people with ID/DD by the U.S. Departmentof Justice, the Commonwealth of Virginia agreed to pay
for Medicaid waiver services for 4,170 more people byJune 30, 2021. They agreed to create an individual andfamily support program to serve 8,700 more people
by June 30, 2022. To pay for these additional services,
Virginia changed three existing waiver programs, closed
four institutions, and helped many people move frominstitutions to community settings.

SED

CLO

SED

CLO

SED

CLO

In 2011, the year before the agreement was settled,
Virginia ranked 20th in the nation for institutional
spending and 45th for community spending. By 2017, it
decreased to 23rd for institutional spending and increased
to 25th for community spending.

$4.12

$4.06

Fiscal effort for ID/DD services in Virginia

$2.40

$2.65

$2.61

$2.54

$1.94

$0.65

2011

$0.68

2012

$0.69

$0.59

2013
Institutional ﬁscal effort

39 | 30 Years of Community Living | acl.gov/30years

2014

$0.46

2015

$0.36
2016

Community ﬁscal effort

$0.37
2017

Technology
My friend has a cell phone. Why
can’t I have one? Technology, andthe help of others, can help me
become more independent.
- Heidi Myhre
40 | 30 Years of Community Living | acl.gov/30years

Getting a better quality of life with technology.
Before he had technology to make his life
better, Mike was bored. He wondered what
was the point? He waited for staff to help
him contact his family, turn his lights on oroff, turn on his TV or change the channel.
He wished he could have a social life, aregular life like everyone else. He wanted
more. There had to be more.
When he found technology he could use,
Mike was ready. In his home Mike now
controls the controls! He turns on lights andchanges channels on the TV. He sends texts

41 | 30 Years of Community Living | acl.gov/30years

and calls family and friends on his own. He
spends his days testing new technology
and sharing his experiences with his peers
and technology companies. In Mike’s own
words, “It changed my life completely
because before I felt like I had no purpose inlife and I was bored and sad. Now I can dothings I could never do before.”Technology supports wellbeing
and community engagement.
Technology helps people with ID/DD participate in theircommunities as they want.
People use their smartphones to connect with friends
and family. They use smart home devices to tell themsomeone is at the door or to connect with coworkers orteachers to learn new skills. This should be no different
for people with ID/DD.
Programs and services should provide access totechnology to support community living.

“I ask my tablet what the weather
is so I can get ready for the day. I
ask it what I am doing for the day. It
answers my questions when I havethings that I want to learn about.
I talk to my mom and dad with it.
I can listen to any music I like! It
reminds me of things I need to do
too. It helps me to be independent.”- Kara Brouhard

42 | 30 Years of Community Living | acl.gov/30years

More money is needed to fundtechnology for people with ID/DD.
From 2007 through 2017, public spending on smart homes,
personal support technology, and remote supports for people
with ID/DD increased. However, spending on technology ($16.6
million in 2017) is far less than 1% of overall spending on ID/DD
supports and services which was $71.7 billion.

smart homes

2013

2015

2016

$827,285$3,189,219$698,681$2,027,417$379,638$1,289,074

2014

personal support technology

43 | 30 Years of Community Living | acl.gov/30years$4,295,695$4,298,494$4,690,650

2012$204,310

2011$590,5122010$158,131$189,720

2009$94,123$186,964

2008$142,183$90,096$3,532,635$77,709$2,595,690$6,129,922

Spending for technology solutions in millions by year

$3,645,571$9,765,152$12,175,455

The amount of money spent on technology has increased very
little in the last 10 years. Most of the spending ($12.2 million in2017) pays for personal support technology such as hearing aids or
wheelchairs. Less is spent on remote supports ($3.6 million). Only atiny amount was spent on smart home technology ($827,000).

2017

remote supports

States fund technology
several different ways.
States use an average of 12 different
funding authorities to buy technology
services, applications or solutions forpeople with ID/DD. Most states use
Medicaid Home and Community-Based
Services Waiver funds. They also use
Medicaid State Plan and Vocational
Rehabilitation funds.

Few states require
technology to beconsidered when people
are planning the services
they will use.
Technology First policies require individual
service planning teams to consider
technology options when person-centeredplans are developed. Technology offers
clear solutions to very challenging issues
such as direct support worker shortages,
healthcare access, unemployment, andservice delivery limits.
In 2020, 17 states and the District ofColumbia had Technology First initiatives.
Those states are Alaska, Colorado,
Connecticut, Hawaii, Indiana, Maryland,
Minnesota, Missouri, New York, Ohio,
Oklahoma, Pennsylvania, South Carolina,
South Dakota, Tennessee, Washington,
and Wisconsin.

44 | 30 Years of Community Living | acl.gov/30years“Technology First gives me
and my friends technology
like everyone else.”- Julian Wang

States arebuying new
kinds oftechnology.

Technology solutions is an umbrella term that includes not
only assistive technology, but also technologies with advanced
accessibility features. In 2019, state ID/DD agencies listed the
top technology solutions they wanted to invest in. Those include
remote supports, smart homes, broadband, telehealth, andtransportation technologies.

Top technology solutions for states in 2019

remote supports

smart homes

broadband

telehealthtransportation technology

45 | 30 Years of Community Living | acl.gov/30years

Conclusion
People with ID/DD want:• Homes of their own, not institutions;• Jobs and meaningful ways to spend their days;• Access to funded supports; and• Access to easy to use technology.

46 | 30 Years of Community Living | acl.gov/30years

A note from our advisors
A team of people with intellectual and/or developmental disabilities helped develop
this report. They helped to break down difficult language and make complex ideas
more understandable. They provided insights and suggestions for improvement.
They were very clear that we need to do more to make our communities truly
inclusive and welcoming for people with ID/DD. Thirty years of progress is just the
beginning.
Following are brief summaries of conversations with project advisors. They
describe the reality of services and supports today and the challenges we must
face going forward.

Community living
We want homes of our own, not institutions. We’ve made progress in getting
away from the big state-run institutions, but it’s not just the big institutions
that are segregating people from their communities. It's also nursing homes andpsychiatric facilities and group homes that have lots of people in them. A grouphome of seven or more people is still an institution. Some group homes are greatbut others are doing poorly.

“We have evolved in termsof our view of disability …
it’s not ‘hush hush’ like theold days.”– Nicole LeBlanc
Getting a home of your own is a big process with many steps, like finding a place to
live, getting supports arranged, and figuring out how to stay safe. Not every story
has a good outcome. Sometimes it doesn't work out. Some people go through threeor four providers before finding the right place. It’s not a perfect system.

47 | 30 Years of Community Living | acl.gov/30years

“There were many years I had to fightjust to be in the community … andnot end up back in an institution.”– Heidi Myhre
Today, young people do not know what residential
institutions are. To them, institutions may mean sheltered workshops. There areplaces like farmsteads and gated communities, segregated facilities that look nicebut are really just new institutions. We have a lot of work to do to make sure weare welcome in our communities.

Employment
We want real jobs and meaningful ways to spend our days. We are humanbeings and we deserve what people without disabilities have. For those of us
who work, we should receive fair pay, not less than people without disabilities.
We want job training, some of us need job supports, and that’s okay. Everybody
needs help sometimes, whether or not they have a disability. We want to havethe opportunity to move up a career ladder. More should be done to make this areality on the federal level.

“We should not be looked downon or given less than people
without disabilities.”– Max Barrows
Not everyone has or wants a job. Some people choose to do unpaid volunteer work.
Some spend their time doing other activities. But our days should be spent doing
meaningful things and we should be able to choose what they are.

48 | 30 Years of Community Living | acl.gov/30years

Expenditures
Money needs to support people with ID/DD living in our communities not institutions.
Money should support us to live the lives we want.

They [the policy makers] don't knowwhat it means to live like we do inregards to how we spend our money.
– Ashley Wolfe
Each state spends different amounts of money to support people with ID/DD. Our legislatorsneed to know we matter and that we need more money to pay for community supports.

Technology
Technology can make our lives easier. Our smartphones have alerts that remind us to do
things like go to an appointment or take medications. We can connect with others throughemail and social media. Our phones and computers can speak to us and help connect us withthe world. Some of us need really complex technology such as medical devices. Others needcommon technologies like wheelchairs or hearing aids to participate in our communities.

“Technology is important for people who
communicate differently. Legislators need tounderstand how important it is for us to haveaccess to current technology. We should all havebroadband internet access so we can connect with
doctors, family members, and friends. We needtechnology that is easy to use.”– Julian Wang
49 | 30 Years of Community Living | acl.gov/30years

A Note from theAdministration forCommunity Living
The vision of the Administration for Community
Living (ACL) is that all people with disabilities canlive independently and participate fully in theircommunities. ACL believes that every person
has the right to make choices and to control
the decisions in and about their lives. This rightis defined by the Developmental Disabilities
Assistance and Bill of Rights Act (DD Act) andother policies. It includes the right to make tomake decisions about where, how, and withwhom people with intellectual and developmental
disabilities live and work, as well as the otherchoices that people make every day to ensure agood quality of life.
For over thirty years, the Administration on
Disabilities at ACL has funded three longitudinalstudies to track the nation’s progress in fulfilling
this vision. Those studies document thehistory, current status, and future of services
and supports for people with intellectual anddevelopmental disabilities in the United States.
30 Years of Community Living summarizes three
decades of research to support individuals
with lived experiences, families, service
providers, policymakers, and advocates to drive
improvements in their communities. Collecting andanalyzing trends in data helps us to understandthe communities we serve and measure theimpact and effectiveness of our initiatives andinterventions over time. We hope you use thisinformation to make informed decisions foryourself, your loved ones, and others for whom
you advocate.

50 | 30 Years of Community Living | acl.gov/30years

Acknowledgements
Report Authors: Sheryl A. Larson,
John Butterworth, Jean Winsor,
Shea Tanis, Amie Lulinski, and Jerry
Smith
Project Advisors: Max Barrows,
Nicole LeBlanc, Heidi Myhre, John
Smith, Katrina Simons, Julian Wang,
and Ashley Wolfe
ACL Advisors: Katherine CargillWillis, Dana Fink, Thom Campbell,
and Jennifer Johnson

Project Reports and Websites
More information about the state andnational trends is available. See theseproject reports and websites or contact thereport authors for this information.
Larson, S.A., Eschenbacher, H.J., Taylor,
B., Pettingell, S., Sowers, M., & Bourne,
M.L. (2020). In-home and residential longterm supports and services for persons
with intellectual and developmental
disabilities: Status and trends through2017. Minneapolis: University of
Minnesota, Research and Training Centeron Community Living, Institute on
Community Integration.

Tanis, E.S., Lulinski, A. & Wu, J., Braddock,D. & Hemp, R. (2020). The State of theStates in Intellectual and Developmental
Disabilities, Boulder, CO: Department of
Psychiatry, University of Colorado.
www.stateofthestates.org
Winsor, J., Timmons, J., Butterworth, J.,
Migliore, A., Domin, D., Zalewska, A., &Shepard, J. (2019). StateData: The national
report on employment services and outcomes.
Boston, MA: University of Massachusetts
Boston, Institute for Community Inclusion.
https://www.statedata.info

https://risp.umn.edu

Funding Acknowledgements
The State of the States in Intellectualand Developmental Disabilities Projectis supported by the Administration forCommunity Living, U.S. Department
of Health and Human Services undercooperative agreement #90DNPA0003.
The StateData employment report is a
product of ThinkWork! at the Institutefor Community Inclusion, University of
Massachusetts Boston, supported in partby the Administration for Disabilities,
Administration for Community Living,
US Department of Health and Human
Services, under cooperative agreement#90DNPA0002.

51 | 30 Years of Community Living | acl.gov/30years

The Residential information Systems
Project is funded through a cooperative
agreement from the Administration forCommunity Living, U.S. Department of
Health and Human Services Grant to
the University of Minnesota, Institute on
Community Integration under cooperative
agreement #90DNPA0001.
Grantees undertaking projects under
government sponsorship are encouraged
to express freely their findings andconclusions. Points of view or opinions do
not therefore necessarily represent official
ACL policy.

References
Hall, A. C., Butterworth, J., Winsor, J., Gilmore,D., & Metzel, D. (2007). Pushing the employment
agenda: Case study research of high performing
states in integrated employment. Intellectual andDevelopmental Disabilities, 45(3), 182–198.
National Core Indicators (2019). In-person survey,
2017-2018 Final Report. Cambridge, MA: Human
Services Research Institute.
Schalock, R. L., Luckasson, R.., & Tassé, M. J.
(2021). Intellectual disability: Definition, diagnosis,
classification, and systems of supports (12thed.). American Association on Intellectual andDevelopmental Disabilities.
The Developmental Disabilities Assistance and Bill of
Rights Act of 2000 (P.L. 106:402)

Recommended Citation
Larson, S.A., Butterworth, J., Winsor, J., Tanis,
S., Lulinski, A., and Smith, J. (2021). 30 years ofCommunity Living for individuals with intellectual and/or
developmental disabilities (1987- 2017). Washington,
DC: Administration for Community Living, U.S.
Department of Health and Human Services.

52 | 30 Years of Community Living | acl.gov/30years