Paul Marchand, one of the foremost advocates in the nation working on behalf of individuals with intellectual and developmental disabilities, has joined NYSARC as a consultant. For 38 years, Paul was one of the most ardent and successful disability policy advocates working on behalf of The Arc and United Cerebral Palsy Organizations. He is a nationally recognized expert on public policy and disability, having been extensively involved in the passage of many vital federal laws, including the Americans with Disabilities Act, the Education for All Handicapped Children Act and its successor, the Individuals with Disabilities Education Act.  

 

Upon announcing Mr. Marchand's appointment, NYSARC, Inc. Executive Director, Marc N. Brandt, stated, "We are very fortunate that Paul has agreed to give us his time and knowledge. I cannot think of a better individual to provide our Organization the analysis and guidance regarding events taking shape at the national level than Paul Marchand."

 

Paul has played a major role in the enactment of legislation to provide supported employment for persons with severe disabilities, to mandate preschool services for children with disabilities, and to establish state programs to serve infants and toddlers.  He was also instrumental in the reshaping of Medicaid policy to move people from segregated and isolated institutions to home and community-based services and supports.  He has made significant contributions to the tremendous expansion of the federal role in disability policy over the past three and a half decades. 

 

Mr. Marchand has testified frequently before the Congress, spoken to national and state non-profit groups, and has appeared on NBC Nightly News, National Public Radio, Nightline, the Today Show, and Good Morning America.

 

Among his assignments with NYSARC, Mr. Marchand will be a regular contributor to Our Voice Today, providing our members with not only the most current and relevant information on national issues but also his own commentary.

NYSARC Trust Services is pleased to announce that it has served its 7,500th beneficiary since its opening in 1972. As the leading provider of supplemental needs trusts (SNTs) in New York State, NYSARC ensures that more than 90% of the funds set aside are used to pay bills that directly contribute to an individual's ability to remain in their community.

Heidi Flatt, Associate Executive Director for Trust Services, is proud of reaching the milestone, "7,500 beneficiaries later, we are still providing individuals with disabilities an opportunity to lead rich, full lives in their communities. Without our services, individuals could lose their eligibility for Medicaid and other government benefits and might be forced into nursing or group homes, placing a major financial burden on the taxpayers of New York State."

 

Patty, the sister of an individual in one of NYSARC's Community Trusts, is grateful for the role the Trust has played in her brother's life, "Ray has had a tough life. Dad passed away when he was 12 and he really went into a shell. When Mom passed away, we put his inheritance into a NYSARC Trust. Since the moment we placed the money in the account, there's never been a time when NYSARC Trust Services hasn't come through. They've let my brother have the life that Mom always wanted for him. If you could see the smile on his face now, it would melt your heart."

 

For more information, please visit NYSARC Trust Services. 

The Office for People with Developmental Disabilities (OPWDD) has approved the optional use of the Medical Orders for Life-Sustaining Treatment (MOLST) form for people with intellectual and other developmental disabilities who lack the capacity to make their own health care decisions. This is effective immediately, and the links to the memorandum issued by the OPWDD counsel's office along with the form and checklist are provided below for your reference and consideration.   

 

Read the OPWDD Memorandum 

 

MOLST Forms

MOLST Checklist (PDF)
MOLST Checklist (doc) 

NYSARC previously had reservations about using the form for participants in the NYSARC Corporate Guardianship Program and other people with intellectual and other developmental disabilities, but the end products appear much simpler and more user-friendly than the ones demoed in previous years. Some help and guidance, supplementing that provided by Compassion and Support, can be provided by NYSARC Counsel, 518-439-8311.  

Latest Updates 

 

At a meeting Monday with State officials from the Division of the Budget, OPWDD, and the Governor's Office, provider groups serving persons with developmental disabilities were informed that Aid to Localities funding will be cut by at least 5 to 6% (Aid to Localities represents all of the services which voluntary providers operate).

 

State officials explained that while a comparison of year-to-year appropriations for Aid to Localities shows only a 2.7% reduction, there are certain "expectations" that require additional funding in the coming budget. 

 

In other words, the year-to-year appropriation comparison fails to reflect full funding in FY 2011-12 for initiatives begun in FY 2010-11.  These include, among other initiatives, new development opportunities and full, as opposed to part-year, funding for a trend factor in New York City due to the July 1 beginning of the City's fiscal year.

 

State officials indicated when all of this is taken into account the actual cut is more like 5-6%.  

 

But the cut is potentially even larger...

Click here to read more at the NYSARC website  

 

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The Herkimer self-advocacy group People Are Beautiful has sent letters and made phone calls in support of: HR Bill 868, to increase the pay and status of Direct Support Professionals; health care reform; Rosa's Law; and keeping Social Security whole.

 

The group has been actively monitoring Managed Service Coordination (MSC) changes and HARC's, the Herkimer County Chapter of NYSARC, efforts to provide alternatives to nursing homes for people who are medically frail. In addition the group recently challenged Self Advocates Becoming Empowered (SABE)'s position that sheltered workshops should be abolished.  Members feel that workshops are a viable option, particularly in light of the limited opportunities available in today's job market.

 

People Are Beautiful will be attending Legislative Awareness Day at the State Capital.  Representatives of the group hope to meet with local Assemblyman Mark Butler and NYS Senator James Seward.  Vice President, Tish Comstock will be discussing a bill that she and her junior college classmates drafted mandating that college professors and instructors receive CPR training. Sergeant at Arms, Brian Wedemeyer, will urge representatives not to make any further cuts to the supports and services needed by people with disabilities. 

 

Tish Comstock, who has played a vital role in the success of the group is a member of the Self-Advocacy Association of New York State (SANYS) Advisory Group, and was nominated for the SANYS Board of Directors.  Tish was also nominated for the Martin Luther King award for her dedication to the cause of freedom and justice for people with disabilities.  Her in-depth paper on the significance of Willowbrook to American History was featured in the SANYS publication, "The Power of Voices".  Tish's passion for self-advocacy can be summed up in the following quote: "My participation in the self-advocacy movement has given me the guts to succeed in the External Diploma Program and with my classes at Herkimer County Community College."  

White Plains - Sheryl Frishman, president of Westchester ARC, the Westchester County Chapter of NYSARC, and a member of the NYSARC Legal Committee has a new TV show, "It's a Matter of Law," on Family Network TV. The show will cover all of the legal aspects of having a child with a developmental disability. Click the video below to watch a sneak preview.



Family Network TV is the first internet-based TV Network with programming specific to the special needs community. The launch lineup will include:

• Dare to be Rare--Filmed in the Australian Rain
• The Imperfect Connection
• It's a Matter of Law
• Siblinghood
• Abilities Expo TV
• Perspective
• And many more

Family Network TV will donate 10% of annual proceeds to Grant Angel Wishes and Travel. To learn more about Family Network TV, please visit their website.