30 Years of

Community Living 

for Individuals with Intellectual and/or 

Developmental Disabilities (1987-2017)
 

The Administration for Community Living has 

funded three longitudinal data projects of national 

significance for nearly 30 years. Those projects 

study where people with intellectual and/or

developmental disabilities (ID/DD) live, if and 

where 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 about

community supports for people with ID/DD.

The Residential Information Systems Project (RISP) is

a 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 are

used for the Community Living chapter.

StateData.info is a project of ThinkWork! at the 

Institute for Community Inclusion at UMass

Boston. StateData and ThinkWork! describe

employment experiences of people with ID/DD

and other disabilities, describe policies and

supports that lead to employment and other

meaningful day activities, and tell personal stories

about employment success. StateData research is

used in the Employment chapter.

The State of the States in Intellectual and 

Developmental 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 the 

community. 

– Nicole LeBlanc 

3 | 30 Years of Community Living | acl.gov/30years 
Community living became a reality for many 

in 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 and 

developmental 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 have

an intellectual disability also have

developmental 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 are

severe enough that the person needs ongoing supports.

Intellectual disability (ID) begins before 

age 22. People with ID have trouble 

learning and solving problems. They also 

have difficulties with practical skills such 

as dressing or shopping, social skills such 

as 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 other

definitions to decide who is eligible for services.

5 | 30 Years of Community Living | acl.gov/30years 
About 7.38 million people in the U.S. have 

intellectual 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. Fewer

than 1 in 100 adults (0.78%) have ID/DD.

Less than 1 in 5 

people with ID/DD 

of all ages (17%) get 

paid supports. 

not receiving receiving supports supports

State ID/DD agencies provide publicly funded

supports for 1.28 million people with ID/DD.

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

Most people served by state 

ID/DD agencies are adults. 

62% of people supported by state ID/DD 

agencies are adults. All children get a 

free public education, some get supports 

from public agencies such as child welfare 

instead of from state ID/DD agencies.

Data Source: RISP
For almost 100 years 

parents were told to 

send 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, or

live with their families.

But institutions were 

miserable places to live. 

Many people entered ID/DD institutions 

as young children. Most never left. Many

got diseases that spread from person to 

person. Between 1880 and 1967, the 

number of people living in state ID/DD 

institutions increased from 2,429 to 

194,650. In 1967, almost half of the 

people in ID/DD institutions were children. 

In 1965, Senator Robert F. Kennedy visited 

Willowbrook State School, one of more 

than 370 state ID/DD institutions. He 

called it an overcrowded, filthy, “snake pit.”

Parents and the public demanded changes.

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

getting smaller and 

began to close in 

the 1960s. 

The number of people with ID/DD in institutions 

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 the

legal 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 to

all 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.

18,807

Number of People in Institutions 

194,650 

1952 1957 1962 1967 1972 1977 1982 1987 1992 1997 2002 2007 2012 2017 

Year 

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.

8 | 30 Years of Community Living | acl.gov/30years 
“Any time you segregate

anybody away from the

community it’s still like being

in an institution. An institution 

is any place you do not have

control over your life or make

your 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 we 

were younger. We had to 

stay mostly on the wards... 

There was a lot of work 

scrubbing floors on our

hands and knees.” 

- Helen Bechold

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

to support community 

participation. 

New laws and public policies made 

communities more welcoming places for

people with ID/DD to live, work and thrive.

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

when everyone is included. 

Some people want to keep institutions for

people 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 more 

choices, do more in their communities and 

have better lives than those in institutions. 

When large groups of people with ID/DD 

live together, they have fewer choices 

about their schedule, meals, and 

activities. Most adults with 

ID/DD want to choose 

the people they live with. 

Many want to live in 

homes of their own. 

Being included means living 

and working with family, 

friends and neighbors. 

People with ID/DD want to work. But 

most spend their days at home or in 

a 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 and 

meet new people. It provides 

a place away from home to do 

something important.

EMPLOYMENT... 

connects people is a path to opportunity means equity 

11 | 30 Years of Community Living | acl.gov/30years 
Between 1987 and 2017 life got 

better for many people with ID/DD. 

1. Four of every five people with ID/DD 2. Medicaid spending on people with

who lived in an institution in 1987 ID/DD increased by three and a half

moved to a community home by 2017. times (from $15.7 billion to $55.3 billion

in 2017 dollars).

community homes 

institutions $55.3

billion

$15.7

billion

1987 2017

3. The number of people with ID/DD

supported to work in community jobs

increased from 33,000 to 135,000.

1987 33,000

2017 135,000

4. The number of people with ID/DD getting Medicaid-funded supports in home and

community-based settings exploded from 22,869 people to 860,500 people.

22,869

860,500

1987

2017

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

12 | 30 Years of Community Living | acl.gov/30years 
13 | 30 Years of Community Living | acl.gov/30years 

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 collect 

very little in taxes while others collect 

more. The amount of money spent on 

supports for people with ID/DD is different 

in each state. 

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 some 

states, most adults with ID/DD getting 

supports work in a community job. In other

states, very few people with ID/DD get 

supports to work in community jobs.
Living in the Community

People with disabilities deserve to live in the

community without being segregated. When we

are included, people see what we have to offer. 

- Max Barrows 

14 | 30 Years of Community Living | acl.gov/30years 
 

 

Living a Dream 

Amy lived with her family until she was 23 

years old. After living in a group home for

three years, she wanted more. 

“I moved into my own apartment right before

Halloween [in October]. It’s awesome. I love

it,” she says. Some changes were made to her

apartment 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 a

landline to avoid using up her mobile

phone minutes. “Which I already did,” Amy

quips. Like all young people, she learned

from a few early mistakes.

Amy’s mother worried about Amy feeling

isolated living alone, but that hasn’t been a

problem. “What I like best is going to see my

friends when I want to and I can come here 

when I want peace and quiet,” Amy said.

Amy works full time, doing packaging 

and assembly work, and enjoys it. She 

now feels ready to try something more 

challenging. “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 homework 

and find a good provider. It doesn’t 

happen automatically,” she said, but “with 

perseverance, high expectations for full 

adult lives..., and talking with other parents, 

it can happen.”

Amy and her 

brother 

15 | 30 Years of Community Living | acl.gov/30years 
 

Most people with 

ID/DD live with family 

members for their whole 

life. Only some get 

funded supports. 

In 2017, of the people getting funded 

supports, 58% lived with a family member, 

12% lived in their own home, 5% lived with 

a host or foster family, 16% lived in a group 

home 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 the 

organization or agency that provides 

services to people in the facility 

16%

Group Home | a residence of six or 

fewer people owned, rented or 

managed by the organization or 

agency that provides services to the 

people in the home 

5%

Host or Foster Family Home | a home 

owned or rented by an individual or family 

that provides supportive services to one or 

more people with ID/DD 

12%

Own Home | a home 

owned or rented by one 

or more adults with ID/DD 

58%

Family Home | a 

residence shared 

by a person with 

ID/DD and their 

related family 

members. 

16 | 30 Years of Community Living | acl.gov/30years 
The number of people with ID/DD getting paid 

supports doubled between 1998 and 2017. 

As the Medicaid Home and 

Community-Based Supports 

Waiver program got bigger, many 

more people with ID/DD were able 

to get paid supports.

1998

693,691

2017

1,319,819

Among people with ID/DD getting supports, children are 

much more likely than adults to live with a family member. 

85% of children lived with

a family member 42% of adults lived witha family member 

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

family 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%) 

13%

1% 67,649 (5%) 

Group settings (all sizes) 250,490 (36%) 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 a 

family 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 
people with ID/DD. 

 

 

By 2017, most people with ID/DD not living with 

a family member shared a home with 6 or fewer 

The percentage of people

with ID/DD not living

with a family member who

lived in homes shared by

six 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 grew

from 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 with

Intellectual Disabilities (ICF/IID) dropped from 145,162

in 1987 to 73,856 in 2017. The number of people

with ID/DD getting Medicaid Home and

Community-Based Supports (HCBS)

Waiver funding increased from

22,689 to 860,500.

22,689 

145,162 

Commun

Institution

860,500 

73,856 ICF/IID 

HCBS 

2017 

ity

1987 1997 2007 

Most adults with ID/DD do 

not get services from state 

ID/DD agencies. 

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 psychiatric

facility. The rest got supports

funded by other sources or got

no paid supports.

21 | 30 Years of Community Living | acl.gov/30years 
By 2017, 17 

states had 

closed all of their 

large state-run 

institutions for 

people 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. States 

with 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 have

a 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, and

Boden 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 the

creative environment at AMP. She works at AMP

four hours a day, three days a week and has another

part 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 from

clients’ 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 another

time. 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 are 

important. 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 to 

provide supports to the person. 

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

 

It is important to 

be part of your 

community when 

you are not working. 

Community life engagement is being part of

your 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 them 

plan and get to these activities.

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

their day in activities 

that are more like 

programs than jobs. 

Some people with ID/DD have jobs that 

are not integrated in the community. 

These jobs often pay less than minimum 

wage, and most of the workers have 

a disability. Often the person with the 

disability receives their paycheck from 

the organization that is paid to help them. 

Sometimes these programs are called 

sheltered workshops.

People are not fully part 

of their community when: 

1. Their job pays less than minimum wage.

2.Most coworkers have a disability.

3. The employer is also paid to provide 

supports.

4.Activities are chosen because the group 

is going.

5. Everyone doing the activity gets 

supports.

6. You go places without knowing why.

“Not being part of the

community is a human

rights issue.” 

- Max Barrows 

27 | 30 Years of Community Living | acl.gov/30years 
 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, 2017

641,608 any employment 

or day service 

integrated 

employment 130,402 

service 

Many people with 

ID/DD want to work 

but do not have a job. 

Research shows us that people with ID/DD want 

community jobs but do not get help to make this 

happen. Only 1 in 5 people with ID/DD have a 

paid, integrated job. Listening to people means 

helping those who want to work to find a job.

Do not have a job Have a job 

8 out of 10 people (80%) with ID/DD do not 

have 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 goal 

Of those 4, fewer than 2 people (40%) have 

a goal to get a job in the community documented 

in their Individualized Service Plan 

Data Source: National Core Indicators, 2017

28 | 30 Years of Community Living | acl.gov/30years 
Most people with paid, integrated jobs have an 

individual job but some work in small groups of 

people with disabilities. 

About 75% of people worked in an 

individual job, and 25% worked in a small 

group job often called a mobile work 

crew or enclave. Small group jobs 

are in the community and can be 

part of a short-term pathway

to employment, but are not 

competitive integrated jobs 

and they may pay less 25% than minimum wage.

75%

group 

supported 

job 

individual job 

People with individual 

jobs work more hours 

and earn more money. 

People in individual jobs worked an average

of 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 at

least minimum wage and offer more hours.

Data Source: National Core Indicators, 2017

$117 

per 

week 

$70 

per 

week 

Group job Individual job 

29 | 30 Years of Community Living | acl.gov/30years 
 

 

Integrated employment is increasing and sheltered 

work is decreasing. However, most people do not 

have community jobs. 

Between 1990 and 2017, the number of

adults with ID/DD in employment or day

supports grew. The number of people in

integrated employment grew from a few

thousand to nearly 150,000. The number

of 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 the 

community. Typically, people with ID/DD 

getting day supports are grouped together

because of their disability instead of by

their common interests or goals.

Number of People 

700,000 

600,000 

500,000 

400,000 

300,000 

200,000 

100,000 

0 

1990 1996 2004 2012 2018

Year 

total 641,608 

non-work 

facility-based 

work 

integrated 

employment 

Data Source: ThinkWork! IDD Survey, 2017

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

supported 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 a 

strong impact on whether or not someone 

gets supports to help them find and keep a 

community job. 

The good news is that we know the 

changes that state ID/DD agencies can 

make 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. 20% 

average 

10% 

State 

Data Source: ThinkWork! IDD Survey, 2017

31 | 30 Years of Community Living | acl.gov/30years 
State policies about 

employment make a 

difference. 

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 with 

disabilities living in those states are more 

likely to have integrated community jobs. 

“Employment First means 

people with disabilities,

people of all abilities, need

to 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 tier 

goal in life and really striving

to get a job and be a part of

your community.” 

-John Fenley, 

People First of 

New Hampshire 

32 | 30 Years of Community Living | acl.gov/30years 
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 in 

states that make employment a priority. 

Those states focus on supporting 

integrated jobs in policy, services, funding, 

training and capacity building, and 

outcome measurement. We call these 

states high performing states. In high 

performing states, agencies like Vocational 

Rehabilitation and Education partner with 

ID/DD agencies to get better results. High 

performing states also have leaders who 

value integrated employment.

The High Performing States Model 

Catalysts Strategy 

leadership 

values 

Policy & goals 

Financing 

Training & TA 

Service innovation 

Outcome data 

Integrated Jobs 

INTERAGENCY COLLABORATION 

Hall et al, 2007

33 | 30 Years of Community Living | acl.gov/30years 
Expenditures

Put your money

where your mouth

is. Are you going to

invest or not? 

- Julian Wang 

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 three

roommates 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 to

shows, 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 other

community parties that were rarely

possible when she was at NVTC. “Living

in the community has been awesome for

Amy,” 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 
Spending for individuals 

with intellectual and/or 

developmental disabilities 

increased over time. 

Researchers studying how public money is 

spent to support people with ID/DD report 

that since 1977, total adjusted spending 

increased every year except for 2011 and 

2014. Total spending was highest in fiscal 

year 2017 at $71.7 billion dollars.

Total ID/DD Public Spending $71.7 billion 

$59.9 billion 

2007 2017 

Fiscal Year 

1997 

$16.4 billion 

$27.4 billion 

$44.5 billion 

1977 1987 

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.

23%

other

spending

77%

Medicaid

spending

36 | 30 Years of Community Living | acl.gov/30years 
Spending has shifted from 

institutions to communities. $64.4 billion

Spending on services provided to people living 

in institutions decreased from 12.3 billion in 

1977 to $7.2 billion in 2017. But spending on 

services provided to people in community settings 

increased from $4.1 billion to $64.4 billion. 

$4.1 billion

$12.3 billion

$7.2 billion

1977 2017 1989 

In 1989 community spending 

surpassed institutional spending and 

continued to increase up to 2017. 

In 1989, community spending 

exceeded spending on 

institutions. 

Until 1989, the government spent more money on 

services in institutions. Since 1989, more money

has been spent on services in community settings. 

In 2017, 90% of all spending on services for

people with ID/DD was for services provided in 

community 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 the 

amount of money spent 

by the state and federal 

government on ID/DD 

supports and services 

per $1,000 of statewide 

personal income. In 

other words, how much 

a state spends on ID/DD 

services considering 

state wealth. 

Total fiscal effort for 2017 

$1.62-$3.50 $3.51-$5.00 $5.01-$6.50 $6.51-$11.65 

fiscal effort 

38 | 30 Years of Community Living | acl.gov/30years 
Virginia's story shows how 

state policy affects spending. 

After the 2012 investigation of Virginia’s public state-run 

institutions for people with ID/DD by the U.S. Department 

of Justice, the Commonwealth of Virginia agreed to pay

for Medicaid waiver services for 4,170 more people by

June 30, 2021. They agreed to create an individual and 

family 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 from 

institutions to community settings. 

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.

CLOSED

CLOSED

CLOSED

CLOSED

$4.12 $4.06

$1.94

$0.65

$2.40

$0.68

$2.54

$0.69

$2.61

$0.59

$2.65

$0.46 $0.36 $0.37

Fiscal effort for ID/DD services in Virginia 

2011 2012 2013 2014 2015 2016 2017 

Institutional fiscal effort Community fiscal effort 

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

My friend has a cell phone. Why

can’t I have one? Technology, and

the 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 or

off, turn on his TV or change the channel. 

He wished he could have a social life, a 

regular 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 and

changes channels on the TV. He sends texts

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 in

life and I was bored and sad. Now I can do

things I could never do before.”

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

and community engagement. 

Technology helps people with ID/DD participate in their

communities as they want. 

People use their smartphones to connect with friends

and family. They use smart home devices to tell them

someone is at the door or to connect with coworkers or

teachers to learn new skills. This should be no different

for people with ID/DD.

Programs and services should provide access to 

technology 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 have

things 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 fund 

technology 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.

The amount of money spent on technology has increased very

little in the last 10 years. Most of the spending ($12.2 million in

2017) pays for personal support technology such as hearing aids or

wheelchairs. Less is spent on remote supports ($3.6 million). Only a

tiny amount was spent on smart home technology ($827,000).

$12,175,455 

$9,765,152 

$4,298,494

$4,295,695

$4,690,650

$6,129,922 

$3,532,635

$2,595,690

$827,285

$698,681

$379,638

$186,964$189,720

$142,183

$158,131

$204,310

$77,709 

$90,096

$3,645,571

$3,189,219

$2,027,417

$1,289,074

$590,512

$94,123 

2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 

Spending for technology solutions in millions by year 

smart homes personal support technology remote supports 

43 | 30 Years of Community Living | acl.gov/30years 
 

States fund technology 

several different ways. 

States use an average of 12 different 

funding authorities to buy technology

services, applications or solutions for

people 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 be 

considered when people 

are planning the services 

they will use. 

Technology First policies require individual 

service planning teams to consider

technology options when person-centered 

plans are developed. Technology offers 

clear solutions to very challenging issues 

such as direct support worker shortages, 

healthcare access, unemployment, and 

service delivery limits.

In 2020, 17 states and the District of

Columbia 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.

“Technology First gives me

and my friends technology

like everyone else.” 

- Julian Wang 

44 | 30 Years of Community Living | acl.gov/30years 
States are 

buying new 

kinds of 

technology. 

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, and 

transportation technologies. 

Top technology solutions for states in 2019 

remote supports 

smart homes 

broadband 

telehealth 

transportation 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 and 

psychiatric facilities and group homes that have lots of people in them. A group 

home of seven or more people is still an institution. Some group homes are great 

but others are doing poorly.

“We have evolved in terms 

of our view of disability ...

it’s not ‘hush hush’ like the 

old 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 three

or 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 fight

just to be in the community ... and

not 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 are 

places like farmsteads and gated communities, segregated facilities that look nice 

but are really just new institutions. We have a lot of work to do to make sure we 

are welcome in our communities.

Employment 

We want real jobs and meaningful ways to spend our days. We are human 

beings 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 have 

the opportunity to move up a career ladder. More should be done to make this a 

reality on the federal level.

“We should not be looked down 

on 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 know

what it means to live like we do in 

regards to how we spend our money. 

– Ashley Wolfe 

Each state spends different amounts of money to support people with ID/DD. Our legislators

need 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 through

email and social media. Our phones and computers can speak to us and help connect us with

the world. Some of us need really complex technology such as medical devices. Others need

common technologies like wheelchairs or hearing aids to participate in our communities.

“Technology is important for people who

communicate differently. Legislators need to

understand how important it is for us to have

access to current technology. We should all have

broadband internet access so we can connect with 

doctors, family members, and friends. We need

technology that is easy to use.” 

– Julian Wang 

49 | 30 Years of Community Living | acl.gov/30years 
A Note from the 

Administration for 

Community Living 

The vision of the Administration for Community

Living (ACL) is that all people with disabilities can 

live independently and participate fully in their

communities. ACL believes that every person 

has the right to make choices and to control 

the decisions in and about their lives. This right 

is defined by the Developmental Disabilities 

Assistance and Bill of Rights Act (DD Act) and 

other policies. It includes the right to make to 

make decisions about where, how, and with 

whom people with intellectual and developmental 

disabilities live and work, as well as the other

choices that people make every day to ensure a 

good quality of life. 

For over thirty years, the Administration on 

Disabilities at ACL has funded three longitudinal 

studies to track the nation’s progress in fulfilling 

this vision. Those studies document the 

history, current status, and future of services 

and supports for people with intellectual and 

developmental 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 and 

analyzing trends in data helps us to understand 

the communities we serve and measure the 

impact and effectiveness of our initiatives and 

interventions over time. We hope you use this 

information to make informed decisions for

yourself, your loved ones, and others for whom 

you advocate. 

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

50 | 30 Years of Community Living | acl.gov/30years 
Project Reports and Websites 

More information about the state and 

national trends is available. See these 

project reports and websites or contact the 

report 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 through

2017. Minneapolis: University of

Minnesota, Research and Training Center

on Community Living, Institute on

Community Integration.

https://risp.umn.edu 

Tanis, E.S., Lulinski, A. & Wu, J., Braddock, 

D. & Hemp, R. (2020). The State of the 

States 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

Funding Acknowledgements 

The State of the States in Intellectual 

and Developmental Disabilities Project 

is supported by the Administration for

Community Living, U.S. Department 

of Health and Human Services under

cooperative agreement #90DNPA0003. 

The StateData employment report is a 

product of ThinkWork! at the Institute 

for Community Inclusion, University of

Massachusetts Boston, supported in part 

by the Administration for Disabilities, 

Administration for Community Living, 

US Department of Health and Human 

Services, under cooperative agreement 

#90DNPA0002.

The Residential information Systems 

Project is funded through a cooperative 

agreement from the Administration for

Community 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 and 

conclusions. Points of view or opinions do 

not therefore necessarily represent official 

ACL policy.

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

Developmental 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 (12th 

ed.). American Association on Intellectual and 

Developmental 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 of 

Community 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