Self-Advocacy Skills for Transition-Age Youthpluk.org/ITVdocs/PFT_Aug_04_08_materials1.pdf · This...

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.

Self-Advocacy Skills for Transition-Age Youth Web Conference

Monday, August 4th, 2008 1:00 – 2:30 PM Mountain Daylight Time

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.

• 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, 2008August 4, 2008

Ellen CondonEllen Condon

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

Asking your boss to explain the new task AND show it to you before she walks away

A ki f h i hAsking for someone to reach an item that you are unable to reach

Asking someone to hold a door open if you are having trouble getting into a buildingare having trouble getting into a building

Asking for a ride somewhereg

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

Although this is frequently stated, many times people with disabilities are unable to participate in:◦ Education◦ Education◦ Social events◦ Employment◦ Health care◦ Transportation

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

Do you understand how your disability impacts you?impacts you?

Can you explain the impact to people youCan 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?Coworker? Someone in the community?

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 life and toprimary causal agent in one s life and to make choices regarding one’s actions free from undue external influence or interference” (Wehmeyer, 1992)

Students who scored higher on the self-determination scale were more likely to be employed earn more per hour have theiremployed, earn more per hour, have their own bank account, and live on their own.

(Wehmeyer and Schwartz 1997)(Wehmeyer and Schwartz, 1997)

Make choicesMake choices

Direct your own IEP

Ask for accommodations

L t l i t th i t t dLearn to explain your strengths, interests and support needs

Set goals

Take reasonable risks

When an activity didn’t go the way you had planned, come up with ways to do something p , p y gdifferently so you succeed next time

Take pride in disability- learn about disabilityTake pride in disability learn about disability culture, learn about disability history, learn about successful people who have a similar disability to yours

Learn and use leadership skillsLearn and use leadership skills

Provide opportunities for youth to make choices

E iEncourage assertiveness

Encourage youth to set their own goalsEncourage youth to set their own goals

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

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 themselvesEncourage youth to speak up for themselves rather than relying on an adult to it (i.e., don’t talk for them).

Include self-determination goals in the IEP:

◦ “Student will introduce herself and describe her strengths, her impact of disability, and her support g , p y, ppneeds 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)

Student will request assistance from (aStudent will request assistance from (a familiar person, acquaintance, someone in the community) to….. y)

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 theirunder my arms and the other place their hands under my knees and lift together?”)

Connie Lewis and Keough Duffy

Worldwide self-governing, self-directing, self-advocacy organization (17 chapters in Montana)

People with disabilities helping each other take charge of their livescharge of their lives

Teaches people with disabilities how to makeTeaches people with disabilities how to make decisions and choices that make them more independent

Promotes rights, dignity, value, and full community inclusion

Advocates for people with disabilities’ rights

Contributes to the community

Members develop leadership skills

Members achieve personal and service goals

People who have a developmental disability can join by…y j y

◦ Completing an application or…

◦ Contacting their local chapter

Some chapters are inviting young people toSome chapters are inviting young people to joinHigh School Kiwanis Key Clubs can lead toHigh School Kiwanis Key Clubs can lead to Aktion Clubs…which are sometimes People First chapters, tooGreat way to learn and practice leadership skills

Young people are welcomed into the Kalispell chapterExamples of activities: softball, fun trips, Big Wheels basketball volunteer workWheels basketball, volunteer work…Examples of skills learned: sticking to it, asking for help understanding and talkingasking for 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:Other States and Countries:http://www.people1.org/directory.htm#United%20States

Wh t S lf AdWhat Self-Advocacy Is to MeIs to Me

Isaac Baldry

Learn to make choices for yourselfyIdentify your needs and wantsShare information with someone you trustPractice what you want to communicateSpeak for yourself; find your voiceDon’t give up if people don’t listen the first timeCelebrate accomplishments

Feeling quiet and too shy to speakFeeling quiet and too shy to speak

Feeling frustrated and ready to explodeFeeling frustrated and ready to explode

Feeling like I don’t know what to doFeeling like I don t know what to do

Feeling afraid of saying the wrong thingg y g g g

Not knowing how someone else will react

Having too many thoughts and feelings at the same time

Wanting to be nice to everybodyWanting to be nice to everybody

Not wanting to cause a problemNot wanting to cause a problem

Not wanting to draw attention to myselfg y

Thinking that no one will understand me g

Not liking the other person enough to try

Figure out what your barriers areFigure out what your barriers are,

then come up with a plan to overcome it!then come up with a plan to overcome it!

What stops you from being your own advocate?

ADAPT as OpportunityADAPT as Opportunity

Presentation by Dustin Hankinson

What or Who is ADAPT?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• 1983 ADAPT founded in• 1983 – ADAPT founded in

Denver by Wade Blank, a nursing home administrator, and friends1983 1990 k d• 1983-1990 – Worked 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 for attendant gservices across the Country

• 2000 – MICASSA (currently known as the Community Choice Act) introduced inChoice Act) introduced in Congress

• 2000-present – ADAPT emphasizes the implementation of theimplementation 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 nonviolent direct action tactics to achieve its goals.”g

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 i h h irights movement. The primary tools of ADAPT, however, are the National Actions they hold. These are protests held in j i i i hmajor cities to meet with a

certain person or group to advance the disability rights agenda. Okay, occasionally

l t ti t t dThe most interesting people

people at actions get arrested, but, for those who go, they consider it the most bonding experience they’ve ever had.

show up at ADAPT National Actions. (Tennessee, 2006)

How to Join the ResistanceThe 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 peopleof 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 h t t b t f ADAPT d illi t fi ht fwho want to be part of ADAPT and are willing to fight 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 you can, , y ,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 CondonKim Brown and Ellen Condon

Join advocacy/activism groups

V lVolunteer

Write lettersWrite letters

Serve on committees/taskServe on committees/task forces/commissions/boards

Give testimonyGive testimony

Run for officeRun for office

Talk to legislators and other lawmakersTalk to legislators and other lawmakers

Vote!!!

“Communicating about the importance of a policy issue or law to people who are in apolicy issue or law to people who are in a position to change it”

Be organizedKnow your stake holdersKnow your oppositionBe clear on your messageKnow what you want as an outcome

National Consortium on Leadership and Disability/Youth

Organizing in order to make a change…

What if a public school doesn’t have an ibl d ?accessible doorway?

Or the football stadium has no accessibleOr the football stadium has no accessible seating?

Attend IEP meetings to support other young people with disabilitiesp p

K thi S ’ “H ? I th Q ti ” h d tKathie Snow’s “How? Is the Question” handout

“Resources” handoutResources handout

Other ideas?Other ideas?

Student’s Name

PERC Self-Advocacy Checklist Setting Steps Teacher/

Mentor Date Acquaintance Date New

Person Date Real life

Situation Date

Introduce Self Describe Strengths

Describe Disability

Describe Support needs

Cla

ssro

om

Present Documentation


Describe Disability


Em

ploy

men

t



Describe Disability


Soci

al/

Com

mun

ity


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: 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. 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 I am very excited to be working here. I am very organized and detail-oriented. I am very outgoing and work well with customers. In a social/community setting I really enjoy meeting new people. I’m really good at figuring out how to take the bus. © 2007 The Postsecondary Education Research Center (PERC) Project, TransCen Inc. www.transitiontocollege.net www.transcen.org

Some words or phrases that might help describing your support needs: 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 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 Here are the forms that show my documented disability and the accommodations that work best for me in the workplace. In a social or community setting Here are the forms that show my documented disability and the assistance I need.

G ood Morning. My name is Bruce

Darling, and today I am testifying

on behalf of the ADAPT Community and the

many thousands of people with disabilities

who want to have a REAL CHOICE so that

they may live fulfilling and productive lives in

the community.

I am the Executive Director of the Center for

Disability Rights (CDR), an Independent Liv-

ing Center based in Rochester,

New York, which provides

community-based services

that support people with dis-

abilities in the community and

advocates on disability issues.

About four years ago, CDR

began to formally transition

people out of nursing homes.

Since that time, our Center has helped over

100 people return to community living.

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

erally hundreds of people from 37 different

states and the Territory of Guam on how to

assist people with disabilities to return to com-

munity living from institutional settings. As I

have traveled throughout the country, I have

heard the same stories from people who had

years of their lives stolen by a system

that supports institutions over indi-

vidual rights.

• People who were separated from

their families,

• People who lost their homes,

• People who lost their freedom

and thought their lives had ended.

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

Page 1

People with disabilities and our allies are fight-

ing the institutional bias, but conviction, train-

ing, and hard work are simply not enough. We

need YOU to take action and establish a na-

tional Community First policy! You have the

power to end the institutional bias and assure

that there are no more stolen lives.

PROBLEM STATEMENT AND ITS IMPACT

ON REAL PEOPLE

Our long-term care system has remained es-

sentially unchanged since its creation nearly

40 years ago. No one would have guessed

that today this system would warehouse over

1.4 million Americans in nursing facilities and

110,572 in ICFs, or Intermediate Care Facili-

ties for the Mentally Retarded.

The system was built on a medical model. At

the time of its creation, individuals with dis-

abilities were considered patients who needed

to be cared for. Over the years, the medical

model has added costs, re-

quiring medical staff to do

tasks which could be done

by an unlicensed attendant

either through delegation

or assignment of a health

professional. In this sys-

tem, health-related tasks

are often done by a nurse, who charges Medi-

caid over $100, rather than an attendant who

is billed at only $15.

The medical model fostered a system where

services were made available based on diag-

nosis, creating fragmentation and service

gaps. I worked with a woman named Lisa Cy-

phers. She wanted to be at home rather than

a nursing home. To go home she needed sup-

port services that were provided under the

state ’ s Traumatic Brain Injury waiver, but be-

cause she had Multiple Sclerosis she was not

eligible for them. Even though she had the

same exact functional needs, she wasn ’ t eli-

gible for the services to get her home.

Over the years long term care services have

become even more fragmented. Attempts at

modernizing the system, including the devel-

opment of new programs and a multitude of

Medicaid Waiver programs, have created a

disjointed mish-mash of services, which vary

from state to state, and even

county to county. States may

have a dozen different waivers

and a complicated array of

services that even the most

skilled social worker couldn ’ t

navigate.

Page 2

Our spending in long term care clearly illus-

trates the institutional bias. According to 2002

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

spent on long term care services goes to insti-

tutional services, while only 30% funds com-

munity services and supports.

The institutional bias is demonstrated on a

personal level as well.

Medicaid rules allow individuals who are in

nursing facilities (or deemed eligible for a

nursing facility and receive services through a

Medicaid Waiver) to retain income up to 300%

of the Supplemental

Security Income

(SSI) federal bene-

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

single person. By comparison in most states,

individuals who need personal care or home

health care are only allowed to retain one third

of that amount.

If an individual ’ s spouse is institutionalized in

a nursing home, federal rules allow them to

keep at least some of their income and re-

sources without totally impoverishing them-

selves. The same is not true for community-

based services. As an example, we worked

with Phyllis Patnode. As a 50-year-old

woman, Phyllis was forced to leave her hus-

band and home and go into a nursing home

because her husband worked and she didn ’ t

want to financially devastate him and her

daughters.

A fundamental problem is that Medicaid fund-

ing for long term care services is securely tied

to the institutions. States must provide institu-

tional services, like nursing home care, while

community-based services are completely op-

tional. To provide alternatives to nursing

homes or ICF-MR facilities, states must apply

for a Medicaid Waiver, which means that the

federal government

is agreeing, on a

case-by-case ba-

sis, to waive certain

Medicaid requirements in order for that state

to provide home and community based ser-

vices. There are often no waiting lists for nurs-

ing homes. However, when states apply for a

Medicaid Waiver, the federal government au-

thorizes a certain number of “ slots ” , which

results in waiting lists for Home and Commu-

nity Based Medicaid Waiver Services.

Because institutional services are mandatory,

states cannot cut their funding. We are in

tough fiscal times. States have no choice but

to cut community based services. Even states

Page 3

that want to provide less expensive commu-

nity-based alternatives are prevented from do-

ing so by a federal policy that mandates insti-

tutional care.

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

portant reason we must change this system. It

isn ’ t what people want.

According to the data from the Centers for

Medicare and Medicaid Services, nearly 19%

of individuals in nursing homes have ex-

pressed an interest in returning to the commu-

nity. This information was col-

lected by the nursing homes

themselves. From our experi-

ence, the number of people who

want to live in the community is

actually much higher. We have

the data that shows this. Accord-

ing to Barriers to Independence,

a study conducted by Access

Living and the Center for Urban

Research and Learning at

Loyola University in Chicago,

64.5% of the nursing home resi-

dents that were surveyed ex-

pressed that they would prefer

to live somewhere else if the op-

portunity were available.

PERSONAL IMPACT: REAL VOICES

Last year, as part of our Stolen Lives Cam-

paign, ADAPT began documenting the names

and stories of people from nursing homes and

institutions.

These stories document the voices of people

institutionalized as children:

Like Leonard Roscoe, from Georgia. Leo-nard 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 behav-iors.’ Nobody believed Patrick could live in the community and he lost over a decade of his life because of this neglect.

These stories document the voices of people

who lost their freedom during the prime of

their lives ’ .

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.

Page 4

To accomplish this, the tie between the institu-

tion and funding must be cut. Individuals must

have real, meaningful and effective choices in

what services they receive, where they re-

ceive services, and who provides those ser-

vices.

Our nation must pass legislation which re-

forms the long term care system and incorpo-

rates the following principles:

• Attendant services must be available in the

community, 24 hours per day, and seven days per week;

• Eligibility must be based on functional

need, not on diagnosis, age, or funding stream;

• Incentives are offered to encourage states

to allow assignment or delegation of care tasks previously restricted to only doctors and nurses;

• Consumer control must be maximized at

every step of the process, including flexi-ble payment and management systems; and • 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.

These stories document the voices of older

persons who were forced to leave their

homes.

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.

I have included the individual stories we re-

ceived 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 commu-

nity based services be

the exception to the

institutional rule.

Community based

services must become

as easy to access as

institutional services.

Page 5

Thousands of people with disabilities in nurs-

ing homes and other institutions will benefit if

you fund these initiatives and give states the

incentive to move people into the community.

This first step, though not the complete an-

swer to ending the institutional bias, will lay

the foundation for the more comprehensive

changes to the Medicaid system that must oc-

cur if nursing homes and other institutions are

to become the alternative rather than the enti-

tlement.

Whether you pass S. 1394 or the ad-

ministration ’ s proposal, it is impera-

tive that you take action now. This

legislation must be passed during this

session. The CMS data I spoke about

earlier shows that at least 267,000

people with disabilities want to return

to the community NOW!

267,000 people are telling the nurs-

ing homes that they want to go home;

267,000 people are asking you to help them

go home; and On behalf of those 267,000

people, I am pleading with you not to make

them wait one more day!

There are other steps you could take to ad-

dress the institutional bias. You could create

First, you must pass Money Follows the Indi-

vidual legislation.

Under this legislation, the Federal government

will fund community-based services for the

first year for individuals who transition out of

institutions! This legislation would provide a

critical incentive to the states in providing Real

Choices in long term care. This will encourage

states to build their capacity to more effec-

tively transition people back into the commu-

nity.

Senator Harkin introduced

the Money Follows the Per-

son Act of 2003 (S.1394)

on July 11th. Shortly after

that, on July 25th, the

White House distributed its

own draft legislation: the

New Freedom Initiative

Medicaid Demonstration

Act of 2003. We understand that you, Senator

Grassley, are considering introducing legisla-

tion based on the administration ’ s proposal.

This more comprehensive legislation would

authorize a Money Follows the Individual

Demonstration program and support other ini-

tiatives to promote community-based ser-

vices.

Page 6

Choice in long-term care. MiCASSA provides

individuals eligible for Nursing Facility Ser-

vices or ICFs with the opportunity to choose

Community-Based Attendant Services and

Supports.

Rather than be forced into institutional place-

ment, people would get assistance in their

own homes. Such assistance would include

the basic activities of daily life that most peo-

ple take for granted like meal preparation, eat-

ing, toileting, bathing, grooming, shopping,

managing finances, and participating in the

community. MiCASSA addresses the need for

assistance with health-related functions.

MiCASSA implements other necessary re-

forms. It would: • provide assistance in the home and com-

munity, such as at school, work, or reli-gious activities;

• include systems for securing back-up at-

tendants; • offer options for consumer control of ser-

vices; • 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 com-munity, such as security deposits for housing, bedding, and kitchen supplies.

an Enhanced Federal Medicaid Matching

Rate for home and community based ser-

vices. By paying a larger percentage of the

cost of home and community based services,

you will create a strong and on-going incen-

tive for states to promote community living.

Such a step would help the states address

their budget difficulties during these difficult

times and promote community living options.

It would also send a clear message that our

nation values the freedom of all of its citizens,

including those with disabilities.

A Lasting Solution

While demonstration programs and enhanced

Medicaid matches would promote community

living, they still leave much work to be done.

The ultimate solution to ending the institu-

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

ties, people with mental health labels and

people with physical disabilities.

We are asking that you take action now!

We would not be here today had it not been

for the heroic efforts of hundreds and hun-

dreds of ADAPT members who have put their

bodies on the line year after year.

On behalf of these people, I would like to

thank you for this hearing.

But on their behalf, I must point out that we

need more than hearings.

We need action.

Take the steps I have outlined today and pass

these important pieces of legislation to FREE

OUR PEOPLE!

For an institution free

America,

Bruce E. Darling

Because the money is following the individ-

ual, MiCASSA is not a new, unfunded man-

date. We pay for this assistance already. Mi-

CASSA makes the existing mandate more re-

sponsive to consumers. People who are al-

ready eligible for services will have a Real

Choice.

Every major national disability organization

supports MiCASSA. In fact, 92 national or-

ganizations are MiCASSA supporters. An ad-

ditional 255 state or regional organizations

also support the bill, as well as 306 local

groups. I have included the full list at the end

of my testimony. As you look through the list,

you will notice that ADAPT is working with

children ’ s advocates and senior advocates.

Supporting organizations represent people

with all types of disabilities: people with cogni-

tive disabilities, people with sensory disabili-

Page 8

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. 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. Most importantly, ADAPT mem-bers 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? ADAPT www.adapt.org [email protected]





The ADAPT Community

The ADAPT Community

The ADAPT Community

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

“In jail your sen-tence has and end, while in a nursing home too often the only way out is a pine box.” - Michelle Steger of St. Louis

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













The ADAPT Community

The ADAPT Community

The ADAPT Community

Help ADAPT change the per-ception that we need special or separate housing, trans-portation and social lives. We are working to build a community that will in-clude every-one.

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

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/

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