Keeping the Promise: Self Advocates Defining

the Meaning of Community Living

March 2011

Summit participants were of leaders from the Autistic Self Advocacy Network, the National 

Youth Leadership Network, Self-Advocates Becoming Empowered, and allies.
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Keeping the Promise: Self Advocates Defining 

the Meaning of Community Living

Background

In June 2009, the Centers for Medicare and Medicaid Services (CMS) 

announced they would be publishing regulations defining the character of home and 

community-based settings. CMS acknowledged that, ―some individuals who receive 

Home and Community Based Services in a residential setting managed or operated by 

a service provider have experienced a provider-centered and institution-like living 

arrangement, instead of a person-centered and home-like environment with the 

freedoms that should be characteristic of any home and community-based setting1.‖ 

CMS stated that using such settings to provide ―home and community based‖ services 

are contrary to the purpose of the 1915(c) waiver program. 

The purpose of this paper is to provide CMS with a definition of "community" that 

captures the most vital elements of community life. In addition, we believe that these 

comments are important contributions to policy issues in the areas of housing, 

education, employment and transportation. 

Introduction

Over the course of the last half century, the United States has made many 

important promises to its citizens with intellectual and developmental disabilities. These 

promises are found in the Developmental Disabilities Assistance and Bill of Rights Act, 

the Americans with Disabilities Act (ADA), the decisions of the Supreme Court and other 

federal courts, the Individuals with Disabilities Education Act (IDEA), the Rehabilitation 

Act of 1973, and other laws, rules, decisions, and findings. Those of us on the ―receiving 

end‖ of the promises have taken our Nation’s commitments seriously. We expect that 

when our country guarantees ―access to needed community services, individualized 

supports, and other forms of assistance that promote self-determination, independence, 

productivity, and integration and inclusion in all facets of community life‖ [as in the 

 

1

“Medicaid Program; Home and Community-Based Services (HCBS) 

Waivers; Center for Medicare and Medicaid Services. Advance notice of proposed rulemaking.” 

Federal Register 74 (June 22, 2009) Page 29453-29456
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Developmental Disabilities Assistance and Bill of Rights Act] the promise will be kept. 

We believe that when our country recognizes ―the right of individuals to live 

independently, enjoy self-determination, make choices, contribute to society, pursue 

meaningful careers and enjoy full inclusion and integration in the economic, political, 

social, cultural and educational mainstream of American society (as in the Rehabilitation 

Act of 1973 as amended, 29U.S.C.794), that we will indeed be in control of own lives. 

When taken together these promises made to citizens with developmental 

disabilities establish a clear national purpose:

 Increasing self-determination and personal control in decisions affecting people 

with developmental disabilities and their families

 Providing opportunities for people with developmental disabilities to live and 

participate in their own communities

 Improving quality of life for individuals and families as they define it for 

themselves

 Supporting families as the most important and permanent unit of development, 

protection, and lifelong assistance to persons with developmental disabilities

 Investing in each individual’s developmental potential and capacity to contribute 

in age-related roles as productive and respected community members

 Ensuring access to sufficient, high-quality health and social supports to protect 

each person’s health, safety, rights, and well-being

 Moving people with developmental disabilities out of poverty by significantly 

increasing opportunities for real work with real pay 

Together these points outline a national commitment to integrated and respected 

community living for people with developmental disabilities. We know this national 

commitment can only be achieved with assistance from service and support provider 

agencies that are committed to and capable of delivering on these collective promises. 

Because these agencies are funded through the Medicaid program, the Centers for 

Medicare and Medicaid Services (CMS) and associated state program agencies are 
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responsible for the quality of service and support delivery. CMS’s direction is central to 

setting standards and expectations for service providers. 

Yet, despite this promise, many individuals who receive home and 

community based services do not experience genuine community settings or 

lifestyles. Many individuals are subjected to segregation, loss of control, lack of 

support, restrictions, no meaningful access to community and other challenges. Over 

time supporters of segregated, secluded, discriminatory or even exploitive models of 

care and support have adopted rhetorically the language of person-centered planning, 

insisting that its principles are at work in their program plans. Increasingly this has 

become a defense for practices that actually contradict the goals of individualized 

supports. Too much emphasis is being placed on the Person-Centered Planning rather 

than the measure of its outcomes. Did planning result in the individual having more 

control and choice in their life? Part of the problem is that often the choices being 

offered are from a profoundly limited menu. 

Outcomes from self-directed lives must be the measures of success. Is the 

person enjoying a healthier and more satisfying life on their terms? Who is in charge? 

Does the individual have more control and choice? Is their participation in community 

genuine and meaningful? Are their relationships authentic?

To address these problems, the Autistic Self Advocacy Network (ASAN), SelfAdvocates Becoming Empowered (SABE) and the National Youth Leadership Network 

convened a National Community Living Summit of self-advocates with developmental 

and intellectual disabilities. Twenty-five people attended the Summit. Immediately after 

the Summit, our team conducted 72 one-on-one interviews with our peers with 

developmental disabilities attending SABE’s national self-advocacy conference. The 

Summit proceedings and interviews addressed three specific questions: 

 What are three things that determine that a place or residential program is not 

part of the community?

 What are three things that determine that a place or program where a person 

gets residential services is truly in the community?
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 What does Community Living really mean?

In attempting to answer these questions, we engaged both through our summit 

and through our interview team and interviewees a wide array of different backgrounds, 

experiences and identities reflective of the broad diversity of our great nation. Our 

participants came from across the country and from every age group. They differed not 

only in the types of disabilities and accommodations, but also in their languages, their 

incomes, their religious beliefs, their sexual orientations, their mode of communication, 

their races and ethnicities and every other manner of diversity. Some came from big 

cities, others small towns and rural areas. Some talked about having spent time in 

institutions - others had grown up in the community. Some have spent many years of 

their adult life in a sheltered workshop or day program – others are competitively 

employed. While we know that no effort can capture every aspect and facet of our wide 

and diverse community, we believe that this report and the process that led to it was 

broadly inclusive and captured many voices typically left out of these discussions. We 

assert the need to leave no voice behind and are proud of the diverse community this 

report represents.

 From the answers to these questions, we found that over and over again people 

said that ―community‖ was more than just a place, size or numbers. We found the 

definition of community living to be multi-dimensional with many different levels, layers 

and domains. Five particular ―dimensions‖ stood out to us: 

 physical size and structure; 

 rights and self-determination; 

 qualities and attitudes of providers; 

 access to community life; and 

 the meeting of support and access needs.

Our recommendations from the Summit and interviews are categorized into these 

five aspects of community living stated above. To ensure that community integration 

is available to all people with disabilities regardless of where they live, we 

recommend applying these standards broadly to all community based services
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and settings, regardless of whether or not the building in which a person lives is 

owned by an agency, service provider, the person themselves or other third party 

entity. By these standards, we commit to hold those in power accountable to the 

promise made to us in the Americans with Disabilities Act, the Developmental 

Disabilities Assistance and Bill of Rights Act, the Rehabilitation Act, the Individuals with 

Disabilities Education Act and countless other pieces of legislation as well as 

regulations, proclamations and other public statements. Thus, we do declare that the 

following principles capture the meaning of living in the community:
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Physical Structure and Size:

We are not in the community when we experience:

Segregation and Isolation: No matter the size, if services support segregation and 

isolation of people with intellectual and developmental disabilities from the community, it 

is not community. Segregation includes ―locking‖ us away and is both wrong and 

dangerous, as it opens up the possibility of undetected abuse. 

Policy Guideline: Gated communities, farmsteads, and clusters of group homes—even 

those that include both people with and without disabilities—are not in the community. 

When we live in those settings we become segregated from the general scope of 

community life. One summit participant noted that community must ―integrate with 

people who don’t have disabilities, and this does not mean staff.‖ 

Lack of Control: It is not community when a provider, licensing authority or the physical 

structure of a building takes away control from the people who live there. We must be 

free to come and go as we please. It is also a problem when we lack the ability to 

control the privacy of our own lives, by limiting our ability to lock the door of our rooms

or our bathrooms or by forcing us to share a room with someone we don’t know or don’t 

desire to live with.

Policy Guideline: Homes in our community must reflect the personal style and 

preferences of the people who live there. We should have a key to our homes and be 

able to lock our bedrooms and bathrooms for privacy. We should not be forced to share 

a room with an unknown or undesired roommate. We should have the right to freely 

access and use kitchens, laundry rooms, and other social and domestic areas of the 

home.

Policy Guideline: People should have the freedom to choose whether to live in a rural, 

urban or suburban community. People should have reasonable access to places of 

commerce, recreation, and other aspects of community life. 
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Large Size: A large congregate care facility is not a home in the community. If a half 

dozen or more people live in a provider-owned group home, it is almost never controlled 

by the people who live there.

Policy Guideline: A home should not be considered ―in the community‖ if more than four 

unrelated people live there. 

Policy Guideline: We should live in apartments, houses, condominiums, trailers, etc. 

located in rural, urban, or suburban communities with typical public resources such as 

shops, houses of worship, places to work, and accessible transportation systems. We 

have the right to live in a safe community among people with and without disabilities.
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Rights and Self Determination

We are restricted from experiencing community life by:

Rules: When we have to do what we are told and staff watch our every move. When we

don’t get to make rules where we live.

Lack of voice: When opportunities for typical life activities are strictly limited to what the 

provider will allow, not our own preferences.

No ability to see friends or family: When we experience limits on our freedom of 

association. When we are restricted and at times punished for expressing our sexuality. 

There is a lack of freedom to come and go. When we feel like we are being locked in.

No say: When we feel disempowered (due to restrictions on freedom and strong selfadvocacy).

No choices: When we have no or limited choices. People make decision for us -

limiting choices about where to live, food, clothing, health care, and spending money.

Policy Guideline: We must have a right to privacy. We must be able to have time to 

ourselves and have a private space with a door that can be locked against intrusion by 

staff or housemates.

Policy Guideline: We must have rights of freedom of mobility, choice, and association. 

Staff cannot set rules about: a) where we go and when, b) when and what we eat or 

drink, and c) who may be invited into our home and at what time.
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People are empowered to live in the community by:

Choice: We have choices about where and with whom we live, how to spend our time, 

what to buy, what to eat and drink, where to go, how to have fun, what to wear, where to 

work, who to chill with, who we date and marry. We are supported to make our own 

medical and sexual decisions. We choose who will give us advice.

Policy Guidelines: Meals are not brought in from a central location designed only to 

prepare food for people with disabilities. We have the right to choose what to eat, when 

to eat and where to eat. When eating at home, meals are prepared in a kitchen unless 

food is ordered from a restaurant or another location available to both individuals with 

and without disabilities. We can choose to make our own meals and use the kitchen 

when and how we want to.

Risk: We are supported to take risks, even if others don’t approve. It is not a big deal 

when one of us makes a mistake. We get support to carry out a plan even when a 

provider does not agree with the decision being made. Service providers support us to 

get non-biased information when making decisions.

Policy Guidelines: We should receive value-neutral support (if requested) to make 

decisions about employment, spending money, diet, entertainment, travel, clothing, 

recreation, friendship, sexuality, relationships, medical decisions, and other relevant 

parts of community life. We may reject this support and choose to make a different 

decision; we may choose not to receive this support if we do not desire it.

Policy Guideline: We, as persons with disabilities, are required to follow one set of laws 

(the same as for other U.S. citizens and residents). We live free of rules established to 

control people with disabilities.
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Qualities and Attitudes of Providers

Attitudes and qualities of providers which limit our opportunity to be a part of the 

community include:

Group Treatment: Agencies that operate programs of congregate care and group 

treatment that diminish our opportunities for a life and daily routines of our own 

choosing.

Power Difference: Agencies that create power differences between those providing 

services and those receiving service so that we are controlled, disrespected and denied 

a chance for self-determination.

Denial of Choice: Agencies that do not take the time or have the skill to listen for and 

identify our personal goals and preferred lifestyles. Agencies that are not committed or 

able to give us the chance to do the things and to be with the people that are most 

important to us.

Lack of Respect: Agencies that fail to teach their employees of the value of each 

person and the ability of each person to communicate his or her desires. Agencies that 

fail to teach their support staff to respond to us in a respectful, age-appropriate and 

helpful manner. 

Branding: Agencies that draw attention to themselves at the cost of the persons they 

support by branding their homes, their vehicles, and their activities. 

Dual Loyalty: Agencies that communicate to support providers that they are working for 

the agency first and for us, the people they support, second. 
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Attitudes and qualities of providers which enhance people’s opportunity to be a 

part of the community include:

Respect: Agencies that teach respect for each individual they support as an important 

person by listening, learning and responding in ways that honor us as individuals and 

increase our control over our own lives

Uniqueness: Agencies that teach and help support providers to know and respond in 

age-appropriate ways to each of us as a unique person with unique interests, 

preferences, needs and goals- not as a person defined by our disabilities.

Independence: Agencies that teach and expect support providers to truly support us to 

be more independent rather than to do things for us.

Choice: Agencies that measure how they are doing in responding to our preferences 

and desires for life as a community member and make changes as needed. 

Equality: Agencies that respect us as having and deserving real homes that are 

respected in the same ways as the homes of everyone else in the community. 

Person-Centered Culture: Agencies that fosters personalized services through a 

person-centered culture of respect for both support receivers and support providers, 

including value-based training, low staff turnover and choice of support providers.

Freedom from Fear: Agencies that provide us with an environment in which we can 

live safely and without fear of harm, neglect, or exploitation from others, including from 

support providers, other program participants, or others in the community.
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Policy Guideline: Those of us receiving services must have control over hiring, firing, 

and supervising staff. This supports our right to self-determination, balances the 

staff/consumer relationship, and makes clear that our needs determine the type of 

support provided. 

Policy Guideline: Staff working to support us as persons with disabilities in the 

community must be trained about our rights, including the right to self-determination, 

and how to support our exercising choice and control in our own lives. There must be 

trained staff to support us in our home, to work, and to participate in the life of our local 

community.
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Access to Community:

Community living is not: 

Segregation: If we are forced to literally live outside a community, it cannot be a 

community living setting. If we live on the outskirts of town, and lack access to the 

mainstream of community life, we are effectively segregated. 

Lack of Transportation: When we lack accessible, affordable transportation, we are 

kept out of our communities. It is important for us to have access to navigational aids so 

we can find bus stops, as well as access to training on how to use public transit. 

Segregated transportation (for example, a bus that is run by a disability provider agency 

just for people with disabilities) is not what we want. We must have access to 

transportation on a basis that is consistent with individuals without disabilities. In rural 

areas or other places with poor access to public transit, it is important that additional 

measures be taken to ensure we as people with disabilities are not isolated and thus left 

more vulnerable to abuse and being left out of community.

Policy Guideline: Those of us receiving home and community-based services must have 

access to accessible, affordable transportation. 

Denial of Choice in Relationships: We should be able to spend time with who we 

want. All of our relationships should be respected. Services and supports should 

accommodate our relationships, not the other way around. Absolute rules like 

unreasonable sleep time restrictions or not being allowed in each other’s rooms do not 

respect our right to be with other persons. We also believe some regulations must be 

changed. We should not be prevented from marrying because of guardianship, 

Medicaid, or Social Security rules.

Policy Guideline: We should not be forced to surrender our right to associate with who 

we want and when we want to communicate as a pre-condition for receiving services. In 

addition, changes to Medicaid, Social Security, and state guardianship laws should 
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ensure that people with disabilities have the right to marry and live with whom we 

choose.

Employment: 

Whether we work in sheltered workshops, enclaves, or day habilitation centers, 

vocational segregation of us from people without disabilities does not count as 

community living. It is not gainful employment if we do not have the opportunity to make 

money at the same levels as other people who work in our community. We lose an 

important aspect of community life if we spend our time only around people with 

disabilities, in day habilitation centers, and are not able to be included in our broader 

communities.

Policy Guideline: We must have opportunities to work in jobs as part of the general work 

force, among people who do not have disabilities. Opportunities for earning wages and 

benefits should be the same as everyone else. CMS funding should be used for 

supported employment and not be used for sheltered workshops or settings paying subminimum wage for people with disabilities. CMS community funding should not be used 

for any segregated settings, including day habilitation centers. Anything that segregates 

us from our communities is not community.

Community living is:

Choice and Agency: We can do what we want when we want to do it, instead of 

having to decide as a big group of people and move together. This does not mean being 

alone in our independence, but exercising our self-determination. 

Full Citizenship. We should be able to contribute fully to the community. This should 

include voting and participating in civic organizations.
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Making a contribution. We believe in reciprocity (two-way relationships), to be able to 

pay forward society’s support. For example, if friends drive us somewhere, we might 

watch their kids in return. We should have the opportunity to volunteer and participate in 

civic life like everyone else.

Knowing What is Going On in the Community We want to know what events and 

activities are happening. We want support to understand information about important 

community issues to make good decisions and have opinions. 

Access to Community Resources. If we have a problem, we want to know where to 

go in the community to help us with solutions. Libraries, service systems, governments, 

and churches should be accessible sources of information and support for us.

Being a Part of a Neighborhood. We should live in a neighborhood where we can 

connect with community members who live next door. We would like to be treated like 

neighbors, and have the opportunity to work to make the neighborhood a better place.

Policy Guideline: State laws that prevent voting by people under guardianship must be 

amended to honor a person’s right to vote. 

Policy Guideline; Rules must not exist that restrict relationships between us as people 

with disabilities and our neighbors in the community. Visiting with neighbors should be 

routine and unobstructed by rules about privacy or liability.
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Support and Access Needs:

Community living is not:

Aversives, Restraint, and Seclusion: When we are subjected to aversives, restraints, 

or seclusion, we are excluded from the community by abusive, inhumane violations of 

our rights that are sanctioned and tolerated by those in power. 

Lack of Control: If we don’t have control over our own personal belongings, money, or 

personal space, we are not in the community.

Policy Guideline: We must have the ability to hire, fire, train, and evaluate our staff 

without restriction or limitation—including no limitations set through options approved by 

an agency. 

Policy Guideline: Typically systems do not separate housing from the services received 

by a person who needs support 24 hours a day. This creates a situation where we are 

not truly in charge of the place where we live. CMS must address the issue of 

separating housing and supports. Changing providers should not require us to leave the 

homes where we desire to live.

Community living is:

Control: We are in charge of our lives, which includes directing our services. 

Communication: A fundamental aspect of community participation is the ability to 

communicate. Individuals must have access to needed augmentative and alternative 

communication (AAC) support, including the assessment, education, technology, and 

support systems needed to make aided communication meaningful.

Policy Guideline: Those of us who experience challenges in spoken communication 

should be supported to try various methods of alternatives and augmentative 

communication (AAC). As new technology becomes available, we should have the 

opportunity to use it to communicate. Staff should keep trying to see what might work 

and support our opportunities to improve our ability to communicate with modes of AAC 
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that progressively vary in capability. Medicaid should pay for AAC devices, including 

AAC provided on ―dual-use‖ devices and systems like iPhones or iPads. 

Digital Inclusion: Telecommunications is a part of the modern community. While living 

in the community, we should have access to a phone, a computer, the Internet, 

necessary assistive technology devices and, if needed, digital literacy training to make 

long-distance and short-distance interpersonal communication meaningful. No limits 

should be set by staff on when and how we access these systems or what types of 

content we can access.

Policy Guideline: CMS funding should support us as persons receiving services to 

access the Internet and learn how to use online technologies. 

Accessibility: Homes, transportation, and other aspects of community life and methods 

of support must be accessible—not just within the guidelines of physical access set by 

the ADA, but truly accessible to us as individuals living there. This means that our 

broader access needs are met—even if they are non-traditional.

Policy Guideline: Wherever possible, support should be provided in ways that 

maximizes our use of natural and peer supports in the community, not just paid staff 

and providers. 

Policy Guideline: The goal of support and services should be to maximize our 

independence and empowerment. Respect the dignity of risk—avoid making 

suggestions that could take control of us in the context of providing support.
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Conclusion

Self-Advocates Becoming Empowered (SABE), Autistic Self Advocacy Network (ASAN)

and the National Youth Leadership Network (NYLN) want to acknowledge and thank 

Commissioner Sharon Lewis for asking us to present this information from the stand 

point of self-advocates which will show how decisions impact people’s lives. This is in 

keeping with President Obama’s charge to his administration. We have jointly presented 

indicators of what community is and what it is not. However, people don’t need special 

skills or education to differentiate between ―genuine community‖ and ―community-like‖ 

settings or lifestyles. Genuine community means having real choice in assistance, 

friends, partners, supports and living circumstances. Genuine community happens in 

inclusive, diverse and mixed neighborhoods. Living in genuine community means 

making your own decisions and being an independent and self-sufficient citizen. Living 

in genuine community is enjoying all the same rights, privileges and responsibilities of 

every other citizen. In genuine community people have names not labels, live in 

neighborhoods not on campuses, make their own choices, and enjoy privacy and 

genuine relationships of equality. 

To some people, these ideas may seem radical. Some people may say that they 

go too far. We disagree – it is only because of the low standards that have controlled 

the world of disability service-provision for too long are these ideas viewed as new or 

unusual. We believe that we should have the same rights and opportunities as anyone 

else. People with disabilities should be, and are by right, equal to people without 

disabilities. This simple but revolutionary idea is what has guided all of our 

recommendations and discussions. We refuse to settle for less any longer. We demand 

for ourselves and for our peers a community that places us in a position of equality to 

our neighbors. We reject the old models of ―care‖ and ―charity‖ for a world that is instead 

ruled by rights, interdependence and true community. By these principles, we make 

common cause and declare to a candid world a new chapter in the disability rights 

struggle.
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Summit participants were of leaders from the Autistic Self Advocacy Network, the 

National Youth Leadership Network, Self-Advocates Becoming Empowered, and allies. 

Autistic Self Advocacy Network Self-Advocates Becoming Empowered

Elesia Ashkenazy Max Barrows

Noranne Cochrane John Britton

Paula C. Durbin-Westby Cathy Enfield

Andrea Joyce Chester Finn

Shawn Kirk Erin Johnson

Savannah Logsdon Tia Nelis

Ari Ne’eman Victor Robinson

Scott Michael Robertson Eric Treat

Joe Wrinkle

National Youth Leadership Network

Micah Fialka Feldman This report was written by:

Reed Hahne Max Barrows

Betsy Valnes George Braddock

Allies Paula C. Durbin-Westby

George Braddock Shawn Kirk

Lucinda Griffin Charlie Lakin

Charlie Lakin Stacey Milbern

Nancy Thaler Ari Ne’eman

Karen Topper Scott Michael Robertson

Nancy Thaler

Special Thanks to the Interview Team Karen Topper

Elesia Ashkenazy Betsy Valnes

George Braddock Nancy Ward

Shawn Kirk Betty Williams

Savannah Logsdon

Ari Ne’eman Editing provided by:

Nancy Thaler Paula C. Durbin-Westby

Ari Ne’eman

Photos By: Shawn Kirk Karen Topper