Fw: [ILAssnMicroboardsandatives] Self Advocacy Organizations Issue New Report on Home and Community Based Services Funding

[Guest guest]

Public comment is still being taken until June 14th. Though this is long, it

will give you the tools to make appropriate public comment, should you wish to

do so.

Ellen

Ellen Garber Bronfeld

egskb@...

[iLAssnMicroboardsandatives] Self Advocacy Organizations Issue

New Report on Home and Community Based Services Funding

Self-Advocacy Organizations Issue New Report on Home and Community

Based Services Funding

Joint ASAN-SABE-NYLN Report Aims to Influence Upcoming CMS

Regulation

WASHINGTON, DC (May 18th, 2011) - Independent living, freedom

and choice - all were focused on in a report developed by a partnership between

the Autistic Self Advocacy Network (ASAN), Self Advocates Becoming Empowered

(SABE), and the National Youth Leadership Network (NYLN) and funded by the

federal government's Administration on Developmental Disabilities. The report -

entitled " Keeping the Promise of Community " - is intended to define the meaning

of community living, just as the Center for Medicare and Medicaid Services is

accepting public comment on a new rulemaking which would put in place standards

for how Home and Community Based Services (HCBS) funds are utilized. As of 2009,

Medicaid Home and Community Based Services (HCBS) waivers accounted for $33.5

billion in Medicaid long term care spending, approximately three-fourth of which

was spent on persons with intellectual and developmental disabilities.

While the original purpose of HCBS funds was for people with

disabilities to live comfortably in " home-like environments while receiving care

that was designed for their specific wants and needs " , the reality of the use is

frequently far from the definition. Many experience institution-like living

conditions, arbitrary restrictions on personal freedoms, and feel almost

completely cut off from society, despite the clear intent of HCBS funding to

support people in their communities. To address this, CMS solicited public

comment earlier this year on setting minimum quality standards HCBS providers

must meet. This new report, issued by the country's three leading self-advocacy

groups in the world of intellectual and developmental disabilities, aims to

inform CMS' decision-making and the disability community's public comments.

" Ensuring the integrity of Home and Community Based Services

is a crucial component of protecting the rights of Americans with disabilities, "

said ASAN President Ari Ne'eman, " We hope this joint ASAN-SABE-NYLN document

will help guide CMS on what people with disabilities ourselves want and - just

as important - don't want in our service-provision. "

The ASAN-SABE-NYLN report was compiled through interviews with

hundreds of self-advocates across the country and a summit attended by national

leaders with intellectual and developmental disabilities of all kinds. The

report reflects the views and experiences of a wide variety of different

self-advocates, including many with significant communication and cognitive

challenges, and supports the language of CMS' proposed rulemaking. In addition,

the report also identifies ways in which CMS can and should go further in

defining community, by laying out five dimensions of community living: a)

physical size and structure, rights and self-determination, c) qualities and

attitudes of providers, d) access to community life; and e) support and access

needs. CMS is accepting public comment on the rulemaking until June 14th. ASAN,

SABE and NYLN have made the report publicly available to help inform public

comment submissions from the disability advocacy community.

CMS' proposed rulemaking requires that entities receiving HCBS

funds must be " integrated in the community; must not be located in a building

that is also a publicly or privately operated facility that provides

institutional treatment or custodial care; must not be located in a building on

the grounds of, or immediately adjacent to, a public institution; or, must not

be a housing complex designed expressly around an individual's diagnosis or

disability, as determined by the Secretary. " Features that would make an

environment institution-like " may include regimented meal and sleep times,

limitations on visitors, lack of privacy and other attributes that limit

individual's ability to engage freely in the community. "

The Autistic Self Advocacy Network (ASAN) is the nation's

leading advocacy organization run entirely by and for Autistic adults and youth.

ASAN's supporters include Autistic adults and youth, cross-disability advocates,

family members, professionals, educators and friends. ASAN was created to

provide support and services to individuals on the autism spectrum while working

to change public perception and combat misinformation by educating communities

about persons on the autism spectrum. The organization's activities include

public policy advocacy, community engagement to encourage inclusion and respect

for neurodiversity, quality of life oriented research and the development of

Autistic cultural activities and other opportunities for Autistic people to

engage with others on the spectrum.

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© waiver

program.

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

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 2 | P a g e

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:

ï‚· Increasing self-determination and personal control in decisions affecting

people with developmental disabilities and their families

ï‚· Providing opportunities for people with developmental disabilities to live

and participate in their own communities

ï‚· Improving quality of life for individuals and families as they define it for

themselves

ï‚· 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

ï‚· Ensuring access to sufficient, high-quality health and social supports to

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

ï‚· 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 3 | P a g e

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),

Self-Advocates 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:

ï‚· What are three things that determine that a place or residential program is

not part of the community?

ï‚· What are three things that determine that a place or program where a person

gets residential services is truly in the community?

4 | P a g e

ï‚· 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:

ï‚· physical size and structure;

ï‚· rights and self-determination;

ï‚· qualities and attitudes of providers;

ï‚· access to community life; and

ï‚· 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 5 | P a g e

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: 6 | P a g e

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. 7 | P a g e

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. 8 | P a g e

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

self-advocacy).

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, when and

what we eat or drink, and c) who may be invited into our home and at what time.

9 | P a g e

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. 10 | P a g e

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.

ng: 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. 11 | P

a g e

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. 12 | P a g e

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. 13 | P a g e

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 14 | P a g e

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 sub-minimum 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. 15 | P a g e

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. 16 | P a g e

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 17 | P a g e

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.

18 | P a g e

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 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. 19 | P a g e

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 Britton

a C. Durbin-Westby Enfield

Joyce Chester Finn

Kirk

Savannah Logsdon Tia Nelis

Ari Ne’eman Victor

on Treat

Joe Wrinkle

National Youth Leadership Network

Micah Fialka Feldman This report was written by:

Hahne Max Barrows

Betsy Valnes Braddock

Allies a C. Durbin-Westby

Braddock Kirk

Lucinda Charlie Lakin

Charlie Lakin Stacey Milbern

Thaler Ari Ne’eman

Topper on

Thaler

Special Thanks to the Interview Team Topper

Elesia Ashkenazy Betsy Valnes

Braddock Ward

Kirk Betty

Savannah Logsdon

Ari Ne’eman Editing provided by:

Thaler a C. Durbin-Westby

Ari Ne’eman

Photos By: Kirk Topper

Partridge

Northern Illinois Field Organizer

Illinois Association of Microboards and atives

www.iambc.org

815-262-0699

3028 N. Trainer Road

Rockford, IL 61114

Join us on Facebook and join the IAMC listserv

A life changed for the better is practice based evidence.

The Illinois Association of Microboards and atives is intended for those

who want to explore possibilities of alternative services for themselves or

their loved ones. The project assists persons with disabilities and their

families and friends to create non-profit corporations that allow them to live

self-directed lives through the use of person-centered planning, community

supports and resource management.