a project of

It’s 2014!

Are Institutions Still

Open in Your State?

Self Advocates Becoming Empowered (SABE)

• It’s 2014! Are There Still Institutions Open in Your State?

• Time: Tuesday, February 25, 2014 from 2:00 to 3:00 PM EST

• Speakers: James Tucker, Associate Director, Alabama Disabilities Advocacy Program Darren Morris, People First of Alabama, Clint Perrin, Steve Holmes and Allan Walley, Self-Advocacy Association of New York State, Advocates in Action, Rhode Island Max Barrows and Nicole LeBlanc, Green Mountain Self-Advocates, Vermont

Self-Advocates Becoming Empowered

• This webinar brings together self-advocates and allies from several of the 13 states in the nation that have closed all institutions. Listen in as speakers discuss lessons learned and what the future holds. Hear how in 2011, Alabama People First worked with allies to become the only state in the entire Southeast to close all institutions. Learn how self-advocates and allies from Advocates For Action are producing a film about the closing of Ladd School in Rhode Island and their current campaign to challenge negative attitudes about people with disabilities. Connect with New Yorkers who are working to eliminate barriers as the Centers for Medicare & Medicaid Services (CMS) emboldens the state to close the remaining doors of their institutions.

Self-Advocacy Association of New York State

• The Self-Advocacy Association of New York State, Inc. (SANYS) is a not-for profit, grassroots organization run by and for people with developmental disabilities. Our goal is to help create a person-centered and person-directed system of supports. To further this goal, the SANYS executive board supports self-advocates and self-advocacy groups regionally and statewide. SANYS encourages them to speak for themselves individually and collectively.

• 7 regional offices and main office in Schenectady, NY 518-382-1454 sanys@sanys.org

• http://www.sanys.org/contact_us.htm

Speakers from Self-Advocacy Association of New York State

Clint Perrin Steve Holmes Allan Walley

Money Follows the Person

• SANYS is working on a new project, Money Follows the Person (MFP). We are teaching people who live in institutions and in Intermediate Care Facilities (ICFs) about their options for community living including individualized and self-directed services, small groups living situations and other options.

• We are talking with people about the Olmstead Decision and their right to live and work in the most included setting possible. This presentation supports people to know that they do have the right to make their own life choices that work best for them.

We Have Choices Film

• We are using our We Have Choices Film and the personal stories of self-advocate presenters to teach about choices. We are also creating a new film called, We have Choices, Too, which will profile people who have lots of needs for supports including people who cannot speak for themselves or express preference in any way (a large number of people in the ICFs).

If you would like a copy of the film, please send a free will donation to cover the cost of mailing to:

Self-Advocacy Association of NY State Building 12 500 Balltown Rd.

Schenectady, NY 12304

• We Have Choices is a documentary exploring the full lives people with developmental disabilities experience when they are supported to live in a place they have chosen to call home, in the community of their choice, with supports they, their family, and their friends have helped create. This is a film about history, self-advocacy, family, community, relationships, love, respect, challenges and opportunities.

• The film focuses on people who are living in their own apartments and homes, for the most part without 24-hour support. But it is important that you know that people can live with choice and individualized services no matter how much support they need, as many do now in New York.

My name is Allan Walley

I am a board member and Co-Vice President of the Self-Advocacy Association of New York

State (SANYS). Our organization believes that all people with developmental and other

disabilities should be supported to live in our community with the supports we need.

SANYS has advocated for the closure of institutions since we became an organization in

1986. SANYS is totally supportive of the Governor’s plan to close all the developmental

centers in NY. I currently live at the Broome Developmental Center. I have lived in an

institution for the past 18 years. I am excited to finally have a chance to move into my own

apartment and to live in the community.

I will be moving on March 3, 2014. I already have my keys to my new place.

My family moved to Arkansas many years ago. My home community is now the Binghamton

area. I look forward to living in my home community. It has been my dream for many years.

I know that some of the people I live with now are also looking forward to moving and some

are nervous about moving. I want to help all of the people at Broome to understand their

opportunities to get the supports they need to live in a community home or apartment close to

where their families and friends live, close to their home community.

When you live in one place for a long you can be both excited and nervous about moving.

Closing institutions is a good thing. But for those of us who have lived for a long time in an institution, we need the support to transition to a community setting.

Alabama Disability Advocacy Program

• ADAP advocated for appropriate treatment and community integration for individuals who resided in State facilities such as Partlow. ADAP participated in discharge planning to ensure appropriate services and treatment were considered. ADAP also participated in choice meetings to ensure the individuals freedom of choice and/or liberties were not threatened.

• ADAP also advocates and monitors the appropriateness of services for individuals with developmental disabilities who reside in a community setting.

People First of Alabama

• People First of Alabama called for Partlow to close. Their reasons included the need to spend more on effective community programs, deteriorating Partlow structures and safety issues.

• In Alabama we accomplished our goal of getting institutions closed. We knew it was an uphill battle but we fought for it together and got it done. If we come together as a group we can get a lot of things done.

• We are very happy that all the institutions are closed in Alabama. And now we are pushing for people with disabilities to be out in community life, working and making their own choices. We have a right to out there too.

• There is no such thing as an impossible dream because every dream can come true if you put your mind and heart into it. It takes the community coming together and educating people who are afraid.

Partlow Center Closes After 88 Years Published: Thursday, December 29, 2011 http://www.tuscaloosanews.com/article/20111229/news/111229817?p=1&tc=pg

• ADAP attorney James Tucker said Alabama set a standard in becoming the first state in the Southeast to close institutions like Partlow.

• “In closing its last state-run institution that segregated persons with developmental disabilities, Alabama continues to improve the quality of services provided to persons with disabilities,” he said. “Our experience has been consistently that once family members see improvements for their loved ones in the quality of life in the community, their objections dissipate.”

• James Tucker, chief legal counsel for ADAP, said care in a state-run facility costs $278,000 per resident per year while community care at group homes costs $74,000 per resident. He said community care is the preferred form of care nationwide.

• W.D. Partlow Developmental Center (Partlow) - Partlow, home for thousands of persons with intellectual disabilities (ID) over its 88 year history, closed December 28, 2011. The Center, located in Tuscaloosa, was the last facility serving persons with ID in the state of Alabama. With its closure, Alabama became the first southeastern state in the US to serve all eligible persons with ID in the community, outside of facility settings.

• In 2008 when Partlow came under fire by the Alabama Disabilities Advocacy program. The program cited allegations of abuse and neglect in calling for Partlow to close.

• They said in 2008 that the cost of treating a client in a community-based setting was $74,000, compared with $278,146 to treat a client at Partlow.

• In 2008, ADAP, the Protection and Advocacy organization in Alabama wrote a report identifying the many reasons why the W. D. Partlow Developmental Center must be closed. Alabama had already closed 3 other institutions. In the one remaining institution costs has soared to more than $278,000 per person each year. Despite the huge budget, people lived in filthy conditions. Their lives were filled with time-wasting activities intended to keep them quiet and compliant. They were subject to abuse and neglect, most cruelly, to being ignored day after day. Partlow had repeatedly failed to meet basic health and safety standards by external funding agencies. http://goo.gl/r6hMC8

Darren Morris People First of Alabama

• When they get out of institutions they have a more free outlook on life. They act more like themselves.

• There is no such thing as saying it is not going to happen. Back in the 60’s in the civil rights movement they fought for change.

• There ain’t no such thing of our dream of closing institutions, not happening. You have to make that dream happen. We need to come together and be strong in what we are doing.

• We want people with disabilities to have the same rights as everyone else. We want out chance to shine. We want our chance to live in in the community.

Darren Morris – People First of Alabama

• One voice can make a ripple in the water. Two voices can make a splash. But if you get hundreds of voices coming together you can make a tidal wave, and sweep over everybody and show people that we as people with disabilities have a voice too.

• In the sixties, it took people like Martin Luther King and others to come together to make change happen.

On the day Partlow closed, Jeff Ridgway from People First of Alabama said, “This is a great day for people with intellectual disabilities because it makes the statement loud and clear that we are people with abilities and we want to be integrated into society rather than segregated into an institution.”

Sample Letter to the Editor from People First of Alabama in Tuscaloosa.com

• Published: Tuesday, March 29, 2011 at 3:30 a.m.

Dear Editor: People First of Alabama today called for the closure of the W.D. Partlow Developmental Center in Tuscaloosa. People First is the largest self-advocacy organization representing people with developmental disabilities in Alabama, including many people who once lived in institutions. People First has been working for years to free people with disabilities from imprisonment in institutions.

To live, work and play in a community with others is a basic right that most people take for granted. People with disabilities however, have been pushed aside, shut out, and ignore for years. They have been locked away in institutions 'for their own good.' This must end now!

As more and more people all over this country, including Alabama, have moved out of institutions, we have seen that even people who the 'experts' said could never leave the institutions, are living full, rich, rewarding lives as contributing members of their communities.

Alabama has closed four of five institutions. There are now over 6,000 people with developmental disabilities who live, work and play in communities all over Alabama. It is time we set the last 150 people free.

People First calls on all who support civil rights for all people, to contact their legislators and the governor and express support for closing Partlow.

Jeff Ridgeway,

President of People First Mobile

Advocates in Action Rhode Island

• Advocates in Action Rhode Island is a Statewide Self-Advocacy organization. Our mission is to empower people who have a developmental disability to advocate for themselves and others, to support and strengthen the Self‐Advocacy movement and to raise awareness about disability issues in the community.

• Advocates in Action RI is currently producing, Best Judgment: Ladd School Lessons, which will be a documentary about Rhode Island's former state institution for people who had a developmental disability.

Best Judgment: Ladd School Lessons A film that both explores and challenges past and present attitudes

toward people identified as having developmental disabilities.

• Best Judgment: Ladd School Lessons is a

documentary film that is being produced by individuals with developmental disabilities, including former residents of the Ladd Center, in collaboration with veteran media professionals. The film will use the history of the Ladd Center as a starting point in considering past and present attitudes toward people with developmental disabilities.

• As the Self-Advocates who are a part of our film crew explain, people who have a developmental disability simply want to be treated the same as everyone else. They want, and need to be accepted as peers by members of their communities. The central goal of our film is to help bring about the change in attitudes necessary to make this happen.

• A good deal of time has been devoted to providing the crew with technical training in film production. Beyond that, the entire production team has been engaged in learning how to create this particular film. Realizing that the film will not succeed unless it is truly a creative collaboration between “professionals” and Self-Advocates, we have been experimenting with a number of interactive and improvisational methods of presenting the story. Some have succeeded, some have not.

• To see a rough cut of a short sequence from our work which deals with the treatment of young women during the early years of the institution go to:

• http://www.indiegogo.com/projects/best-judgment-ladd-school-lessons

• Jimmy Isom grew up at the Ladd Center and is serving as an advisor and co-producer for the film. Jimmy has been singing all his life. Watching him belt out a song while “playing” a table like a bongo drum, it’s clear that he possesses abundant natural musical talent. He has always dreamed about being on stage and “being in show biz”. About 3 months ago he began working with prominent Rhode Island musician and songwriter, Mark Cutler, to create a musical score for Best Judgment. Since beginning their collaboration, Jimmy’s singing has changed markedly. His performances are more polished, and he’s begun experimenting with harmonies, which is something he has never done before. Mark has not been tutoring him! Their sessions have involved viewing film footage and jamming. We have come to realize that Jimmy’s remarkable improvement must be the result of his acceptance as a peer by a fellow musician.

Are you the caregiver of a person with intellectual or developmental disabilities?

Then, The Arc needs your help!

Complete our Caregiver Survey to tell us more about the health status of the person you care for

and about your plans for the future. All information gathered will be used only to identify

aggregate concerns and will never be used to identify individuals.

http://www.thearc.org/healthmeet/caregiver-assessment

For more information, email Jennifer Sladen at sladen@thearc.org

a project of

The National Autism Resource & Information Center

Website: www.autismnow.org

Information & Referral Call Center: 1-855-828-8476

Next Webinar: Tuesday, March 25, 2014 from 2:00-3:00 PM Eastern

Autistic Self Advocacy Network

PowerPoint/Recording: Email Phuong (pnguyen@autismnow.org) to request any additional materials!