Self-Advocacy Skills for Transition-Age Youth Web Conference

Monday, August 4th, 2008 1:00 – 2:30 PM Mountain Daylight Time This presentation will describe self-advocacy skills critical to life-long success for young people with disabilities. Presenters will describe a variety of ways in which these skills can be developed, practiced and honed. Topics to be covered include: • Self-advocacy and self-determination…what are they? • What types of self-advocacy skills do young people need and how can they develop these skills? • What are some of the advocacy organizations a person might want to join? • What are other ways to engage in advocacy/self-advocacy/activism? Presenters: Ellen Condon, Rural Institute Transition Project Director, has over 23 years of experience working in the field of developmental disabilities. She has served as Principal Investigator and Director of nine Transition Projects focused on employment for youth since arriving at the Rural Institute in 1996, and also directed the employment agency, MontanaWorks. Ellen works as a consultant for Marc Gold & Assoc. and Griffin-Hammis Assoc., LLC, and serves on the Employment Committee for TASH and the board of directors for Employment for All. Connie Lewis, Rural Institute Transition Project Liaison, has worked at the Rural Institute for six years providing clerical and administrative support to the Training Department and the Transition Projects. She is the Vice President of the Missoula People First chapter, an Aktion Club member of Kiwanis, on the Board of Directors of Very Special Arts (VSA) and a singer in the VSA choir, and she has participated in advocacy classes at Summit Independent Living. Keough Duffy, People First, is currently employed at The Bookstore at UM. Prior to accepting that job, Keough worked at the Rural Institute providing clerical and administrative support for the Child Care Plus Project for six years. She is a member of the local People First Chapter, and the elected state senator for the Montana People First organization. She participates in the VSA choir, is an Aktion club member of Kiwanis, and has competed in Special Olympics for the past 18 years. Keough has served on the Montana Council on Developmental Disabilities since 2005, is a MT-TIRC Advisory Board member, and is a season ticket holder for the Missoula Community Theatre. Isaac Baldry, MYLF delegate, is a junior at Custer County District High School. He is a member of the PLUK Youth Associate Board, and recently became a member of the MT-TRIC board. Isaac attended the 2008 Montana Youth Leadership Forum as a delegate. He has been a Special Olympic athlete for 7 years and has spoken as a Global Messenger. Dustin Hankinson, a disability rights advocate in Missoula for the past ten years, has committed himself to the cause of making the lives of persons with disabilities better. As a person who lives with Muscular Dystrophy in rural Montana, Dustin has carved out an independent life and survived the transition from youth to adult quite well. Dustin has been a Peer Advocate for Summit Independent Living Center since 2001, a Director on the Board for Disability Rights Montana since 2005 and an unofficial ADAPT warrior for several years. Now looking to broaden his perspective, Dustin was appointed to the MT-TIRC steering committee just months ago. Kim Brown, MSW, Rural Institute Transition Project Coordinator/Co-Director, started her human services career in 1982. She joined the University of Montana Rural Institute as a Transition Project Coordinator in July 2003 and currently serves as Project Coordinator for the Montana Transition Training, Information and Resource Center, and Project Co-Director of the Partnerships for Transition Project.

One hour of Montana Office of Public Instruction Renewal credit is available and may be requested at registration. There is no cost to participate in this training session thanks to the generous sponsorship of the Administration on Developmental Disabilities and the Montana Council on Developmental Disabilities.

Registrations are due by 5:00 PM on Wednesday, July 30, 2008. Registrants will receive an email with Web conference access information after the registration process has closed. If you have not received your access instructions by Friday, August 1st, contact Kim Brown at [email protected].

To REGISTER, go to www.cspd.net and follow the online registration process. • •

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Click on "Region V CSPD Online Registration." If you have an account on the Web site, log in using your email and password. Go to “Events Catalog” and “Register” for the appropriate training event. You may also wish to go to “My Profile” and check your email address – access instructions are sent to this address so it needs to be current and correct. If you have never been on the Web site, click on “Click here if you are a new user.” Enter your account information (needed in order for the CSPD site to recognize you). If you are registering from outside Montana, you will need to “add a city” and enter your state. Once you’ve registered for the CSPD site, go to “Events Catalog” and “Register” for the appropriate training event by completing the online registration.

The registration template asks for “billing information.” DON’T WORRY! There is no charge for this training. Select either “bill me” or “bill my organization” and continue with your registration. You will see the charge is “zero.”

If you have trouble REGISTERING, contact Nancy Marks at [email protected] Or call Char at 406-728-2400 ext 1090. The University of Montana provides reasonable accommodations to individuals with disabilities who request and require them. Please contact Kim Brown at [email protected] for information. If you will be using a screen reader for this presentation, please notify Kim by Friday, August 1st. This training is an activity of the Partnerships for Transition Project, which is funded by the Montana Council on Developmental Disabilities, and of MT-TIRC, which is funded by the Administration on Developmental Disabilities. Registration services are provided at no cost by the Montana Region V Comprehensive System of Personnel Development (CSPD).

August 4, 2008

Ellen Condon

Knowing what you need and being able to ask for it it.

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Asking your boss to explain the new task AND show it to you before she walks away Asking A ki ffor someone to reach h an item i that h you are unable to reach Asking someone to hold a door open if you are having trouble getting into a building Asking g for a ride somewhere

A way in which people speak up, voice their opinion, p , and take responsibility for being equal within society (People First of NH) NH).

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Although this is frequently stated, many times people with disabilities are unable to participate in: ◦ ◦ ◦ ◦ ◦

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Education Social events Employment Health care Transportation

National Youth Leadership Network (NYLN) & ( ) Kids as Self Advocates (KASA)

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Do you understand how your disability impacts you? Can you explain the impact to people you work with, who you need help from? Do you understand what things help you do a good job or to participate? Can you ask for these things from your boss? Coworker? Someone in the community?

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A concept reflecting the belief that all individuals have the right to direct their own lives Attitudes and abilities required to act as the primary causal agent in one’s one s life and to make choices regarding one’s actions free from undue external influence or interference” (Wehmeyer, 1992)

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Students who scored higher on the selfdetermination scale were more likely to be employed earn more per hour employed, hour, have their own bank account, and live on their own. (Wehmeyer and Schwartz, Schwartz 1997)

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Make choices

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Direct your own IEP

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Ask for accommodations

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Learn tto explain L l i your strengths, t th interests i t t and d support needs Set goals

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Take reasonable risks When an activity didn’t go the way you had planned,, come up p p with ways y to do something g differently so you succeed next time Take pride in disabilitydisability learn about disability culture, learn about disability history, learn about successful people who have a similar disability to yours Learn and use leadership skills

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Provide opportunities for youth to make choices

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E Encourage assertiveness i

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Encourage youth to set their own goals

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Allow youth to take risks and make mistakes but also facilitate the processing and learning from those mistakes

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Teach youth about their impact of disability and assist them to recognize their strengths, skills and support needs. Teach skills such as: asking for help, making choices, expressing an opinion, and sharing information. Encourage youth to speak up for themselves rather than relying on an adult to it (i.e., don’t talk for them).

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Include self-determination goals in the IEP: ◦ “Student will introduce herself and describe her strengths, g , her impact p of disability, y, and her support pp needs to a familiar teacher, a new teacher, and/or an employer using her portfolio…” ◦ “If needed, the student will also present documentation of her disability (for a medical appointment, for an interview with VR, DD, or college)” (PERC Self advocacy checklist)

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Student will request assistance from (a familiar person, acquaintance, someone in the community) y) to….. Describe how the person can best assist you (“When you help me transfer from my chair to this seat, could one person place their hands under my arms and the other place their hands under my knees and lift together?”)

Connie Lewis and Keough Duffy

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Worldwide self-governing, self-directing, selfadvocacy organization (17 chapters in Montana) People with disabilities helping each other take charge of their lives Teaches people with disabilities how to make decisions and choices that make them more independent Promotes rights, dignity, value, and full community inclusion

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Advocates for people with disabilities’ rights

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Contributes to the community

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Members develop leadership skills

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Members achieve personal and service goals

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People who have a developmental y can jjoin by… y disability ◦ Completing an application or… ◦ Contacting their local chapter

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Some chapters are inviting young people to join High School Kiwanis Key Clubs can lead to Aktion Clubs…which are sometimes People First chapters, too Great way to learn and practice leadership skills

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Young people are welcomed into the Kalispell chapter Examples of activities: softball, fun trips, Big Wheels basketball basketball, volunteer work work… Examples of skills learned: sticking to it, asking for help, help understanding and talking about teasing, always believing in yourself, respecting others, honesty… People First members are willing to present at schools

Montana: http://peoplefirstmt.ruralinstitute.umt.edu/index.asp Other States and Countries:

http://www.people1.org/directory.htm#United%20States

Whatt Self-Advocacy Wh S lf Ad Is to Me

Isaac Baldry

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Learn to make choices for y yourself Identify your needs and wants Share information with someone you trust Practice what you want to communicate Speak for yourself; find your voice

Don’t give up if people don’t listen the first time

Celebrate accomplishments

9Feeling

quiet and too shy to speak

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frustrated and ready to explode

9Feeling

like I don’t don t know what to do

9Feeling g

afraid of saying y g the wrong g thing g

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knowing how someone else will react

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Having too many thoughts and feelings at the same time

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Wanting to be nice to everybody

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Not wanting to cause a problem

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Not wanting g to draw attention to myself y

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Thinking g that no one will understand me

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Not liking the other person enough to try

Figure out what your barriers are are, then come up with a plan to overcome it!

What stops you from being your own advocate?

ADAPT as Opportunity Presentation by Dustin Hankinson

What or Who is ADAPT? ADAPT. Okay, you’re thinking. It’s an acronym (a whole bunch of letters tossed together to make long titles and names short) but what does it mean? Exactly what I asked when I heard of it. Well, ADAPT really isn’t an acronym anymore. After archaeologically digging, I discovered ADAPT’s original meaning: American Disabled for Accessible Public Transit. ADAPT began in Denver in 1983 as a series of protests about the lack of accessible buses in the city. They did this by blocking buses around the US to demonstrate what lack of access meant.

ADAPT’S logo: a symbol of freedom.

A History of ADAPT •

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1983 – ADAPT founded in Denver by Wade Blank, a nursing home administrator, and friends 1983 1990 – Worked 1983-1990 k d on guaranteed access to public transit for PWDs 1990 – Celebrated as a major player in the development and passage of the ADA 1990 onward – ADAPT takes up the fight g for attendant services across the Country 2000 – MICASSA (currently known as the Community Choice Act) introduced in Congress 2000-present – ADAPT emphasizes the implementation of the Olmstead Decision in States and pushes for Money Follows the Person policies

Wade Blank, Founder of ADAPT.

So, what does ADAPT do? ADAPT uses “civil disobedience and similar non- violent direct action tactics to achieve its g goals.” Quote from ADAPT.org ADAPT has a role of fighting for equality and justice for PWDs. They meet with officials, research policies and create awareness of the disability rights i h movement. The h primary i tools of ADAPT, however, are the National Actions they hold. These are protests held in major j cities i i to meet with i h a certain person or group to advance the disability rights agenda. Okay, occasionally people l at t actions ti get t arrested, t d but, for those who go, they consider it the most bonding experience they’ve ever had.

The most interesting people show up at ADAPT National Actions. (Tennessee, 2006)

How to Join the Resistance The following is directly from ADAPT.org: “ADAPT is like no other organization of which you may be a member. From the national to the local level, ADAPT has an informal structure. There are no money dues, no membership cards. How do you join? To become involved with ADAPT you must have an active interest in the issue of changing the long term care system, getting people attendant services in the community and getting folks out of nursing homes and other institutions…The national organization is made up of local groups and individuals who h want t t to b be part t of f ADAPT and d are willing illi t to fi fight ht f for accessibility and community-based attendant services. Groups cover cities, states, regions but there are many lone warriors out there too…Then, , as soon as y you can, , come to one of our national actions (held in the spring and fall). Once you come to an action, all the pieces will start to fall into place.”

To explore ADAPT, please go to ADAPT.org.

Kim Brown and Ellen Condon

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Join advocacy/activism groups

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V l Volunteer

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Write letters

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Serve on committees/task forces/commissions/boards

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Give testimony

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Run for office

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Talk to legislators and other lawmakers

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Vote!!!

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“Communicating about the importance of a policy issue or law to people who are in a position to change it” Be organized Know your stake holders Know your opposition Be clear on your message Know what you want as an outcome x National Consortium on Leadership and Disability/Youth

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Organizing in order to make a change… What if a public school doesn’t have an accessible ibl d doorway?? Or the football stadium has no accessible seating? Attend IEP meetings to support other young people p p with disabilities

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Kathie K thi Snow’s S ’ “How? “H ? Is I the th Question” Q ti ” handout h d t

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“Resources” Resources handout

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Other ideas?

Student’s Name

PERC Self-Advocacy Checklist

Classroom

Introduce Self Describe Strengths Describe Disability Describe Support needs Present Documentation

Employment

Steps

Introduce Self Describe Strengths Describe Disability Describe Support needs Present Documentation

Social/ Community

Setting

Introduce Self Describe Strengths Describe Disability Describe Support needs Present Documentation

Teacher/ Mentor

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Acquaintance

Date New Person

Date

Real life Situation

Date

Student’s Name

Directions for Using the PERC Self-Advocacy Checklist

Work with your teacher or peer mentor to practice the listed self -advocacy skills in each setting with: 1. Your mentor, or your teacher, or a someone you know well; 2. An acquaintance (someone you may have met, but do not know well) 3. Someone you have never met before (arranged by your teacher or mentor) 4. The appropriate person in the real-life situation. Once you feel that you can do this very well without any help, put a check mark in the box and write down the date. Helpful Hints • You don’t have to use your disability label if you don’t feel comfortable with it. Just describe what you can do well and what you need help doing. •

When you find words that feel good to you, write them down to help you remember them and then practice using them again next time.

• Remember that it is OK to be nervous when talking about yourself; everyone feels that way. Practice will make it easier.

Some words or phrases that might help describing your disability:

Some words or phrases that might help describing your support needs:

In a class I have difficulty hearing/seeing and need to sit in the front of the room. I have a learning disability that makes it hard for me to process lectures. My disability makes it difficult for me to read and write.

In a class In order to be successful in your class, I need to get notes ahead of time. I have learned that these accommodations have worked best for me. To hear everything you are saying clearly, I need to sit in the front row. In the past, I have been most successful when given extra time on a test.

On the job I have a learning disability that makes it hard for me to remember instructions when you tell them to me. My disability makes it hard for me to quickly count money. I have a seizure disorder that is controlled by medication. In a social/community situation I have a hearing impairment that makes it difficult for me to understand everything. My disability makes it hard for me to read and understand the instructions on my medicine. I have cerebral palsy and sometimes get tired after walking for a while. Some words or phrases that might help describing your strengths: In a class I am very excited about being in your class. I have always been interested in child development and I am quick learner. I have always had an interest in art and am good at sketching. I have a really good memory.

On the job In order to be successful on the job, I need to have my daily instructions written down. In the past, I have done a great job at the cash register if I have a practice guide next to me. In case I have a question, I need to know who I should go to first. In a social or community setting Sometimes I have difficulty understanding people when they talk too fast; could you speak a little slower? I have trouble reading that menu board. Could you help me pick out lunch? I don’t understand these forms very well. I have all the information with me - could someone help me fill this out? Some words or phrases that might help in presenting documentation, if necessary: In a class Here are the forms that show my documented disability and the accommodations that work best for me in a class.

On the job I am very excited to be working here. I am very organized and detail-oriented. I am very outgoing and work well with customers.

On the job Here are the forms that show my documented disability and the accommodations that work best for me in the workplace.

In a social/community setting I really enjoy meeting new people. I’m really good at figuring out how to take the bus.

In a social or community setting Here are the forms that show my documented disability and the assistance I need.

© 2007 The Postsecondary Education Research Center (PERC) Project, TransCen Inc. www.transitiontocollege.net www.transcen.org

End the Institutional Bias: No More Stolen Lives! MiCASSA, Money Follows the Individual and More! Testimony of the ADAPT Community Before the Senate Finance Committee, Washington DC. April 6, 2004 Presented by Bruce E. Darling

G

ood Morning. My name is Bruce

Since that time, our Center has helped over

Darling, and today I am testifying

100 people return to community living.

on behalf of the ADAPT Community and the many thousands of people with disabilities

Over the last few years, I have also trained lit-

who want to have a REAL CHOICE so that

erally hundreds of people from 37 different

they may live fulfilling and productive lives in

states and the Territory of Guam on how to

the community.

assist people with disabilities to return to community living from institutional settings. As I

I am the Executive Director of the Center for

have traveled throughout the country, I have

Disability Rights (CDR), an Independent Liv-

heard the same stories from people who had

ing Center based in Rochester,

years of their lives stolen by a system

New York, which provides

that supports institutions over indi-

community-based services

vidual rights.

that support people with disabilities in the community and advocates on disability issues.

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People who were separated from their families,

About four years ago, CDR

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People who lost their homes,

began to formally transition

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People who lost their freedom

people out of nursing homes.

and thought their lives had ended.

Page 1

People with disabilities and our allies are fight-

are often done by a nurse, who charges Medi-

ing the institutional bias, but conviction, train-

caid over $100, rather than an attendant who

ing, and hard work are simply not enough. We

is billed at only $15.

need YOU to take action and establish a national Community First policy! You have the

The medical model fostered a system where

power to end the institutional bias and assure

services were made available based on diag-

that there are no more stolen lives.

nosis, creating fragmentation and service gaps. I worked with a woman named Lisa Cy-

PROBLEM STATEMENT AND ITS IMPACT

phers. She wanted to be at home rather than

ON REAL PEOPLE

a nursing home. To go home she needed support services that were provided under the

Our long-term care system has remained es-

state ’ s Traumatic Brain Injury waiver, but be-

sentially unchanged since its creation nearly

cause she had Multiple Sclerosis she was not

40 years ago. No one would have guessed

eligible for them. Even though she had the

that today this system would warehouse over

same exact functional needs, she wasn ’ t eli-

1.4 million Americans in nursing facilities and

gible for the services to get her home.

110,572 in ICFs, or Intermediate Care Facilities for the Mentally Retarded.

Over the years long term care services have become even more fragmented. Attempts at

The system was built on a medical model. At

modernizing the system, including the devel-

the time of its creation, individuals with dis-

opment of new programs and a multitude of

abilities were considered patients who needed

Medicaid Waiver programs, have created a

to be cared for. Over the years, the medical

disjointed mish-mash of services, which vary

model has added costs, re-

from state to state, and even

quiring medical staff to do

county to county. States may

tasks which could be done

have a dozen different waivers

by an unlicensed attendant

and a complicated array of

either through delegation

services that even the most

or assignment of a health

skilled social worker couldn ’ t

professional. In this sys-

navigate.

tem, health-related tasks Page 2

Our spending in long term care clearly illus-

woman, Phyllis was forced to leave her hus-

trates the institutional bias. According to 2002

band and home and go into a nursing home

Medstat data, 70% of the $82.13 billion that is

because her husband worked and she didn ’ t

spent on long term care services goes to insti-

want to financially devastate him and her

tutional services, while only 30% funds com-

daughters.

munity services and supports. A fundamental problem is that Medicaid fundThe institutional bias is demonstrated on a

ing for long term care services is securely tied

personal level as well.

to the institutions. States must provide institutional services, like nursing home care, while

Medicaid rules allow individuals who are in

community-based services are completely op-

nursing facilities (or deemed eligible for a

tional. To provide alternatives to nursing

nursing facility and receive services through a

homes or ICF-MR facilities, states must apply

Medicaid Waiver) to retain income up to 300%

for a Medicaid Waiver, which means that the

of the Supplemental

federal government

Security Income

is agreeing, on a

(SSI) federal bene-

case-by-case ba-

fit rate, nearly $1,700 per month for a

sis, to waive certain

single person. By comparison in most states,

Medicaid requirements in order for that state

individuals who need personal care or home

to provide home and community based ser-

health care are only allowed to retain one third

vices. There are often no waiting lists for nurs-

of that amount.

ing homes. However, when states apply for a Medicaid Waiver, the federal government au-

If an individual ’ s spouse is institutionalized in

thorizes a certain number of “ slots ” , which

a nursing home, federal rules allow them to

results in waiting lists for Home and Commu-

keep at least some of their income and re-

nity Based Medicaid Waiver Services.

sources without totally impoverishing them-

Because institutional services are mandatory,

selves. The same is not true for community-

states cannot cut their funding. We are in

based services. As an example, we worked

tough fiscal times. States have no choice but

with Phyllis Patnode. As a 50-year-old

to cut community based services. Even states

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that want to provide less expensive commu-

PERSONAL IMPACT: REAL VOICES

nity-based alternatives are prevented from doing so by a federal policy that mandates insti-

Last year, as part of our Stolen Lives Cam-

tutional care.

paign, ADAPT began documenting the names and stories of people from nursing homes and

In addition to all of this, there is one very im-

institutions.

portant reason we must change this system. It isn ’ t what people want.

These stories document the voices of people institutionalized as children:

According to the data from the Centers for Medicare and Medicaid Services, nearly 19% of individuals in nursing homes have expressed an interest in returning to the community. This information was collected by the nursing homes themselves. From our experience, the number of people who want to live in the community is actually much higher. We have the data that shows this. According to Barriers to Independence, a study conducted by Access

Like Leonard Roscoe, from Georgia. Leonard was put in the institution in 1972 after living in hospital the first 3 years of his life. Leonard has Osteogenesis Imperfecta (brittle bones). He was institutionalized for 35 years before he got out. Like Patrick King from Austin, Texas. When Patrick was eight he got hit on the head in a schoolyard accident resulting in multiple disabilities. He ended up in a Texas State Mental Health Hospital and stayed there for over a decade because he had what was described as ‘bizarre behaviors.’ Nobody believed Patrick could live in the community and he lost over a decade of his life because of this neglect.

Living and the Center for Urban

These stories document the voices of people

Research and Learning at

who lost their freedom during the prime of

Loyola University in Chicago,

their lives ’ .

64.5% of the nursing home residents that were surveyed expressed that they would prefer to live somewhere else if the opportunity were available.

Like June Adams from Denver, Colorado. June had two little boys when she had her stroke. She was put in a nursing home, where she was held captive for 17 years while her children grew up without her.

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These stories document the voices of older

To accomplish this, the tie between the institu-

persons who were forced to leave their

tion and funding must be cut. Individuals must

homes.

have real, meaningful and effective choices in

Like Betty Cranston from Lake Katrine, New York. When Betty's COPD worsened and she needed a ventilator, she was forced into a specialized nursing facility hundreds of miles away from her son, home, and small town. Even though she did much of her own personal care at the facility and her son wanted his mother to return home to live with him, she was forced to stay there because she couldn't get approved for community services or a portable ventilator.

what services they receive, where they receive services, and who provides those services. Our nation must pass legislation which reforms the long term care system and incorporates the following principles: •

Attendant services must be available in the community, 24 hours per day, and seven days per week;

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Eligibility must be based on functional need, not on diagnosis, age, or funding stream;

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Incentives are offered to encourage states to allow assignment or delegation of care tasks previously restricted to only doctors and nurses;

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Consumer control must be maximized at every step of the process, including flexible payment and management systems; and

I have included the individual stories we received at the end of this testimony. Their words are compelling. Their voices rise up and ask for just one thing: freedom. SOLUTIONS: REAL CHOICES It is clear that we need a new model. No longer should community based services be the exception to the institutional rule. Community based services must become as easy to access as institutional services.

Attendants must earn a livable wage and benefits. •

Immediate Actions This shift will take time, but there are immediate steps you can take to end the institutional bias.

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First, you must pass Money Follows the Indi-

Thousands of people with disabilities in nurs-

vidual legislation.

ing homes and other institutions will benefit if you fund these initiatives and give states the

Under this legislation, the Federal government

incentive to move people into the community.

will fund community-based services for the

This first step, though not the complete an-

first year for individuals who transition out of

swer to ending the institutional bias, will lay

institutions! This legislation would provide a

the foundation for the more comprehensive

critical incentive to the states in providing Real

changes to the Medicaid system that must oc-

Choices in long term care. This will encourage

cur if nursing homes and other institutions are

states to build their capacity to more effec-

to become the alternative rather than the enti-

tively transition people back into the commu-

tlement.

nity. Whether you pass S. 1394 or the adSenator Harkin introduced

ministration ’ s proposal, it is impera-

the Money Follows the Per-

tive that you take action now. This

son Act of 2003 (S.1394)

legislation must be passed during this

on July 11th. Shortly after

session. The CMS data I spoke about

that, on July 25th, the

earlier shows that at least 267,000

White House distributed its

people with disabilities want to return

own draft legislation: the

to the community NOW!

New Freedom Initiative Medicaid Demonstration

267,000 people are telling the nurs-

Act of 2003. We understand that you, Senator

ing homes that they want to go home;

Grassley, are considering introducing legisla-

267,000 people are asking you to help them

tion based on the administration ’ s proposal.

go home; and On behalf of those 267,000

This more comprehensive legislation would

people, I am pleading with you not to make

authorize a Money Follows the Individual

them wait one more day!

Demonstration program and support other initiatives to promote community-based ser-

There are other steps you could take to ad-

vices.

dress the institutional bias. You could create

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an Enhanced Federal Medicaid Matching

Choice in long-term care. MiCASSA provides

Rate for home and community based ser-

individuals eligible for Nursing Facility Ser-

vices. By paying a larger percentage of the

vices or ICFs with the opportunity to choose

cost of home and community based services,

Community-Based Attendant Services and

you will create a strong and on-going incen-

Supports.

tive for states to promote community living. Rather than be forced into institutional placeSuch a step would help the states address

ment, people would get assistance in their

their budget difficulties during these difficult

own homes. Such assistance would include

times and promote community living options.

the basic activities of daily life that most peo-

It would also send a clear message that our

ple take for granted like meal preparation, eat-

nation values the freedom of all of its citizens,

ing, toileting, bathing, grooming, shopping,

including those with disabilities.

managing finances, and participating in the community. MiCASSA addresses the need for

A Lasting Solution

assistance with health-related functions.

While demonstration programs and enhanced

MiCASSA implements other necessary re-

Medicaid matches would promote community

forms. It would:

living, they still leave much work to be done. The ultimate solution to ending the institu-

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provide assistance in the home and community, such as at school, work, or religious activities;

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include systems for securing back-up attendants;

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offer options for consumer control of services;

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address the inequity in financial eligibility between nursing facilities and community based services; and

•

support essential, but minor expenses needed by people returning to the community, such as security deposits for housing, bedding, and kitchen supplies.

tional bias, which has stolen the lives of so many thousands of seniors and people with disabilities, is clear. Pass MiCASSA! The Medicaid Community Attendant Services and Supports Act (S. 971) gives people Real

Page 7

Because the money is following the individ-

ties, people with mental health labels and

ual, MiCASSA is not a new, unfunded man-

people with physical disabilities.

date. We pay for this assistance already. MiCASSA makes the existing mandate more re-

We are asking that you take action now!

sponsive to consumers. People who are already eligible for services will have a Real

We would not be here today had it not been

Choice.

for the heroic efforts of hundreds and hundreds of ADAPT members who have put their

Every major national disability organization

bodies on the line year after year.

supports MiCASSA. In fact, 92 national organizations are MiCASSA supporters. An ad-

On behalf of these people, I would like to

ditional 255 state or regional organizations

thank you for this hearing.

also support the bill, as well as 306 local groups. I have included the full list at the end

But on their behalf, I must point out that we

of my testimony. As you look through the list,

need more than hearings.

you will notice that ADAPT is working with children ’ s advocates and senior advocates.

We need action.

Supporting organizations represent people with all types of disabilities: people with cogni-

Take the steps I have outlined today and pass

tive disabilities, people with sensory disabili-

these important pieces of legislation to FREE OUR PEOPLE! For an institution free America, Bruce E. Darling

Page 8

The ADAPT Community

A

The ADAPT Community

A

The ADAPT Community

A

DAPT is a national grass-roots disability rights group. We work for equality and positive change in policy and programs to include people with disabilities in American society.

DAPT is a national grass-roots disability rights group. We work for equality and positive change in policy and programs to include people with disabilities in American society.

DAPT is a national grass-roots disability rights group. We work for equality and positive change in policy and programs to include people with disabilities in American society.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Do you want to live in a nursing home?

Do you want to live in a nursing home?

Do you want to live in a nursing home?

ADAPT www.adapt.org [email protected]

ADAPT www.adapt.org [email protected]

ADAPT www.adapt.org [email protected]

You think prison is bad, try living in a nursing home.

You think prison is bad, try living in a nursing home.

You think prison is bad, try living in a nursing home.

“In jail your sentence has and end, while in a nursing home too often the only way out is a pine box.”

“In jail your sentence has and end, while in a nursing home too often the only way out is a pine box.”

“In jail your sentence has and end, while in a nursing home too often the only way out is a pine box.”

- Michelle Steger of St. Louis

- Michelle Steger of St. Louis

- Michelle Steger of St. Louis

Without affordable, accessible, integrated housing options, people with disabilities are often sentenced to expensive and abhorrent institutions. ADAPT is working for an integrated community with the same choices that we all demand in housing.

Without affordable, accessible, integrated housing options, people with disabilities are often sentenced to expensive and abhorrent institutions. ADAPT is working for an integrated community with the same choices that we all demand in housing.

Without affordable, accessible, integrated housing options, people with disabilities are often sentenced to expensive and abhorrent institutions. ADAPT is working for an integrated community with the same choices that we all demand in housing.

The ADAPT Community

A

The ADAPT Community

A

The ADAPT Community

A

DAPT is a national grass-roots disability rights group. We work for equality and positive change in policy and programs to include people with disabilities in American society.

DAPT is a national grass-roots disability rights group. We work for equality and positive change in policy and programs to include people with disabilities in American society.

DAPT is a national grass-roots disability rights group. We work for equality and positive change in policy and programs to include people with disabilities in American society.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

The main goal of ADAPT is to end the institutional bias in Medicaid that forces people with disabilities from their home and families into expensive institutions and nursing homes.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

ADAPT proposes legislation, advises decision-makers and suggests constructive solutions on local, state and national levels. ADAPT believes in action. Like classic civil rights struggles, we may use nonviolent civil disobedience.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Most importantly, ADAPT members have helped thousands of people with disabilities live in their own homes with their own families instead of being locked away in undesirable institutions.

Do you want to live in a nursing home?

Do you want to live in a nursing home?

Do you want to live in a nursing home?

ADAPT www.adapt.org [email protected]

ADAPT www.adapt.org [email protected]

ADAPT www.adapt.org [email protected]

People with disabilities are still struggling to be an equal part of the American community.

People with disabilities are still struggling to be an equal part of the American community.

People with disabilities are still struggling to be an equal part of the American community.

Help ADAPT change the perception that we need special or separate housing, transportation and social lives. We are working to build a community that will include everyone.

Help ADAPT change the perception that we need special or separate housing, transportation and social lives. We are working to build a community that will include everyone.

Help ADAPT change the perception that we need special or separate housing, transportation and social lives. We are working to build a community that will include everyone.

www.adapt.org

www.adapt.org

www.adapt.org

Self-Advocacy Resources  

• • • • • • • • • • • • • • • •  

The Riot!  www.theriotrocks.org   “The Hearts and Minds Project”   The story of the struggle for equal rights for people with disabilities   http://www.webintegrity.com/cgi‐bin/checkitout/checkitout.cgi?attitudeSTORE:h  The National Youth Leadership Forum ‐ developing the next generation of disability  leaders  http://nyln.org/  The Arc, providing advocacy for individuals with intellectual disabilities  http://www.thearc.org/NetCommunity/Page.aspx?&pid=183&srcid=‐2   The Riot! Fun Page offers information on self‐advocacy  http://www.hsri.org/leaders/theriot/funpage.htm  Kids As Self Advocates (KASA) is created by and for youth…KASA provides  information and support to help youth make choices and advocate for themselves  http://www.fvkasa.org/  Mouth – Voice of the Disability Nation is an edgy, innovative advocacy organization  http://www.mouthmag.com/  Disabled and Proud provides information on Disability history, culture and  community  http://www.disabledandproud.com  Advocating Change Together (ACT) distributes tools to promote self‐advocacy  http://www.selfadvocacy.com  Self Advocates Becoming Empowered works to make sure people with disabilities  are treated as equals  http://www.sabeusa.org  CHADD (Children and Adults with Attention‐Deficit/Hyperactivity Disorder) provides  resources and advocacy information for individuals with AD/HD and their families  http://www.chadd.org/  Disability is Natural offers thought‐provoking articles to promote new ways of  thinking about disability   http://www.disabilityisnatural.com/  Disability World produces a web‐zine of international disability news  http://www.disabilityworld.org/  National Consortium on Leadership and Disability for Youth is a youth‐led resource,  information, and training center for young people with developmental disabilities   http://www.ncld‐youth.info/index.htm   “Self‐Determination for Middle and High School Students” article  http://www.ncset.org/topics/sdmhs/default.asp?topic=30  Beach Center on Disability   http://beachcenter.org/