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November, 2009

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In the News

Two charged with abusing developmentally disabled residents in Hunterdon

County

" Asylum of Terror " Promo Rankles DD and Mental Health Communities

Hamilton Township Creates Commission on Persons with Special Needs

Bayonne Bus Driver is Leaving Rider with Spina Bifida at the Curb

The Just Say Something Campaign has several components:

www.justsaysomething.org, a new website, created as a forum to share ideas,

observations and perspectives.

Media outreach to bring broad attention to the issue

A media watch, to monitor coverage about issues affecting people with

disabilities

The Just Say Something E-newsletter

Support for local activities - like hosting your own local Community

Conversation

Social networking, check out our Facebook page; Twitter with us!

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is a project of

The New Jersey Council on Developmental Disabilities

PO Box 700

Trenton, NJ 08625-0700

TELEPHONE (609) 292-3745

TOLL-FREE 1 (800) 792-8858

FAX (609) 292-7114

Click Here to Email the Council

Visit the Just Say Something website for more: www.justsaysomething.org

Forward the Just Say Something E-newsletter to a friend

Welcome to the November issue of the Just Say Something newsletter

With the gubernatorial election behind us, and a number of new state

officials coming to Trenton in January, now is the time to kick this

education campaign into high gear.

Our state leaders, from Gov-elect Christie on down, must recognize that

people with developmental disabilities have a legitimate voice in public

discourse and must be heard.

With the new agenda in Trenton, this is our opportunity to bring our

concerns to the forefront and ensure people with developmental disabilities

are part of the dialogue to make New Jersey an even better place to live.

Over the past few months, the Just Say Something campaign has taken

significant steps to encourage people with developmental disabilities and

others to speak up when they see discrimination in their communities. And

this campaign has also given people the opportunity to highlight good people

doing good things to encourage inclusion.

I invite you to log on to the Just Say Something website to post your

comments.

These are new, exciting times in New Jersey. We need fresh voices added to

the public discourse to ensure people with development disabilities are

rightfully represented.

- Alison Lozano, Ph.D.

Executive Director, NJCDD

In Your Back Yard: The Conversation Continues

A writer with an ID of " Nantanee Koppstein " posts a great piece on the Just

Say Something blog on Oct. 17:

" Our 21-year-old daughter with developmental disabilities, , aged out

of school this June. Despite her having done a few job samplings while in

her high school and even having a paid job during 2 summers as a junior camp

counselor in a local YMCA, didn't have a paid job after graduation.

In April, I read an article in a local newspaper about services provided by

Mercer County One-Stop Career Center for youths seeking summer employment.

began to participate in pre-employment workshops given by One-Stop

Career Counselors. The workshops were challenging for , but the

counselors made accommodations for and encouraged her to apply to

Mercer ACES (Access to Career and Employment Services) Program.

After being determined eligible for ACES and attending an ACES job fair,

was offered a paid position as a food service assistant at Young

Scholars' Institute in Trenton. served and tidied up after breakfasts

to campers at Trenton Community Charter School.

She also helped with general office work. had the guidance of a job

coach, which I hired from the pay she received. Older ACES participants such

as attended career training classes at Mercer County Community

College in the afternoon. They were paid for work and study time from the

Federal Stimulus Fund to Mercer County.

The summer experience received was made possible by the counselors at

Mercer One-Stop Career Center who worked with us every step of the way; her

co-workers and supervisors at the Young Scholars' Institute and Trenton

Community Charter School who more than welcomed ; her wonderful job

coach; her teachers at Mercer County Community College in Trenton who made

accommodations and included her in all class activities; and the Federal

Stimulus Fund.

The experiences gave valuable job skills and records. After I told

him that was very happy to work there because people were very nice

to her, the Assistant Director of Young Scholars' Institute said to me:

" What else should she expect! "

I wish the rest of the world would have this attitude. "

A Just Say Something Profile: Kay Weber

Kay Weber has a unique talent: a soft-spoken way of being an advocate.

Before she is done calmly explaining her position, you find yourself nodding

your head in agreement.

Add up all of the encounters Weber has on a daily basis and it's pretty

clear why she is one of the most valuable leaders of the self-advocacy

movement for people with developmental disabilities.

What issues are closest to her heart?

" Just about all of them, " Weber said. " Housing. Employment. I feel

particularly strong about freedom. Even though our country was founded on

the principle that all people are equal, that's not always how all people

are treated. "

" Just Saying Something " About Institutions

Weber, who serves as the vice-chair of the New Jersey Council on

Developmental Disabilities, enthusiastically supports the Council's " Just

Say Something " Campaign, which encourages people to speak up every time they

see something positive or negative in their day-to-day life that affects

people with developmental disabilities.

She has been " just saying something " since 1976, when she was placed into

the Neurological Psychiatric Institute (North Princeton Developmental

Center) at the age of 17. Her father took her there to see if she could live

on her own. Weber has had epilepsy since birth.

Weber detested institutional life right from the beginning. The atmosphere

inside the developmental center was more like a prison than a hospital, she

said. Windows were barred. Residents were locked into their rooms. She felt

most of the nurses and doctors did not care about her well-being and none

respected her intelligence. One nurse taunted her, saying she would never

see the outside world.

" That was one institution you didn't want to go to, " Weber said. " If you

need someone to burn down that building I'll volunteer, because I hate those

institutions with a passion. "

Weber lived at North Princeton for seven years. She was released in 1983, at

the direction of a psychiatrist. She was at the institution voluntarily, but

needed the psychiatrist's release in order to obtain important papers she

would need to work and live on her own. Weber says she " buttered up " that

psychiatrist in order to obtain those papers, a further testament to her

diplomacy skills.

At age 24, she moved back to Monmouth County, living in Shrewsbury, Atlantic

Highlands and Eatontown before settling in her current home in Shrewsbury

Village. Her experience at North Princeton makes her want to help others

living in institutions transition to fulfilling lives in their communities.

Embracing Self-Advocacy

The self-advocacy movement was in the beginning stages when Weber left North

Princeton. She embraced it wholeheartedly. She became a founding member of

New Jersey United Self-Advocates, a group that helped the self-advocacy

movement rise to prominence throughout the 1980s and 1990s.

New Jersey United Self-Advocates worked to teach people about self-advocacy,

disability rights and how to take political action. The organization held

civil rights protests in Washington, D.C., California and many places in

between. They also participated in community service, such as helping

students with behavioral problems.

" We were self-advocating for disability rights, " Weber said. " Before that,

if you had a disability, you weren't treated with respect. We were trying to

get our rights recognized as normal human beings, no different than anyone

else. "

The United Self-Advocates is where Weber met Kate Blisard, a fellow advocate

she worked closely with who would soon become one of her best friends.

New Jersey announced the closing of North Princeton in 1994 and Blisard was

asked to serve as the coordinator of a team that helped residents transition

to community life. That team was the " Seeking Ways Out Together " (SWOT)

Team, which Weber also decided to join.

Weber was a huge asset to the transition team, having lived in the

institution for seven years and successfully moved out herself. She joined

the speaking team and helped the group assist people leaving the facility

through peer counseling, peer support and peer advocacy. She met with

residents both individually and in group settings to help them make the

transition successfully.

" We tried to help the residents see that this wasn't the place for them to

be, " Weber said. " Some of them were there for so long that it was the only

home they knew. "

There were more than 500 people living at North Princeton at the time, so it

is no stretch to say that Weber helped hundreds of residents deal with the

transition, just as she has helped hundreds of people through her advocacy

efforts.

" Kay was involved with many of the people who were pioneers in

self-advocacy, " Blisard said. " She really helped give the movement form and

direction in the 1980s and early 1990s. "

The self-advocacy movement took off as Weber and other pioneers encouraged

people with developmental disabilities to take control of their own lives.

They also urged government to provide support mechanisms for people with

mental and physical challenges, not mandates on where and how they must

live.

Self-advocates helped remove a number of barriers that isolate many people

with developmental disabilities. In 1999, the Supreme Court's Olmstead

Decision vindicated self-advocates everywhere by affirming the rights of

individuals with disabilities to live in the community of their choosing.

New Jersey had to come up with a plan to de-institutionalize the state and

comply with the Supreme Court's decision. Ms. Weber dedicated herself to the

effort by attending conferences, testifying at hearings and speaking out on

the issues.

" The Olmstead Decision was a victory for self-advocates because we finally

accomplished something, " Weber said. " The government finally understood that

we are not this group of lowlifes. We have rights. We can get to work. We

can be a member of society. We can function. It took us years to do, but we

were able to accomplish something. "

A Savvy Leader

Weber leads an active lifestyle that includes working two jobs and juggling

a few hobbies in addition to her self-advocacy work.

Weber joined the New Jersey Council on Developmental Disabilities in 1999

and took over as vice-chair earlier this year. She works as a stocker at A.

C. in Shrewsbury and as a ticket taker at the Loews AMC Theater in the

Monmouth Mall. She spends much of her spare time doing community service and

fundraising for charitable organizations. She also enjoys word puzzles,

reading, writing poetry and playing board games. Her friends label her a

fashion aficionado.

" She is a great dresser, " Blisard noted. " Kay always looks like she

stepped right out of a fashion magazine. "

Some of Weber's hobbies come in handy for the advocacy groups she belongs

to.

The SWOT Team has been able to survive with its own funding, partially

thanks to Weber. Her homemade crafts are available at every conference and

community fundraiser she attends and the proceeds go directly to SWOT.

" The self-advocacy and disability rights movements have come so far in the

past 25 years. We've gone national with this and we've made a huge stamp on

society, " Weber said. " We need to keep it up, through efforts such as the

Just Say Something campaign, so society can recognize that people with

disabilities are human beings too. "

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E-newsletter development by CCS . The Just Say Something campaign is carried

out under a New Jersey Council on Developmental Disabilities grant to Jaffe

Communications, Inc., and Considine Communication Strategies, LLC.

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New Jersey Council on Developmental Disabilities

PO Box 700

Trenton NJ 08625-0700

TELEPHONE (609) 292-3745

TOLL-FREE 1 (800) 792-8858

TDD (609) 777-3238

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