Affiliate Update 2013

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4-17-13 CP NEWS

4/17/2013 2:34:44 PM

An html version of the 4/17/13 CP NEWS can be found HERE.



4/17/13 Affiliate Update

(Volume #19 – Issue #7)

-Susan Constantino, President & CEO

On behalf of the Board of Directors and staff at CP of NYS, I want to offer my sincere thanks to your families, staff, volunteers and others in your communities for their efforts in support of our campaign to end what one legislator called “… this attack on people with disabilities.”

Despite emotional appeals from members of both parties, and virtually unanimous support from the members of both houses of the NYS Legislature, the State Budget still contains a $90 million cut from the OPWDD voluntary system. However, because of all of your advocacy efforts, we have been assured by the State that this cut will be implemented in a way that will not impact supports and services for people with developmental disabilities.

Our field has not seen this level of support from individual legislators, the media and the public in my memory. The display of support on the floor of the New York State Assembly during the debate on the cut to supports and services for people with developmental disabilities on March 28 was unprecedented. Regardless of how the members voted, the sentiments were emotional, bipartisan and heartfelt.  

It is important to remember that even if your local Assemblymember did not speak, it does not mean that they were not committed or that they didn’t fight as hard as those who spoke for full restoration. Not all members are afforded the opportunity to speak during debates. This unprecedented display of support on the Assembly floor apparently occurred in every conference and meeting to discuss the budget. It occurred when we were there to witness it and when it was behind closed doors with only legislators present.   

This is the result of your advocacy!

However, as Assemblyman Harvey Weisenberg said that day in the Assembly, “We are not done!” We still need to continue our efforts to ensure that there is adequate funding to support services for people with developmental disabilities.

Thank you!


Courtney Burke, the Commissioner of the Office for People With Developmental Disabilities (OPWDD), released a plan for implementing the Governor’s cut in funding to supports and services for people with developmental disabilities.

•    $40 million from a combination of Office of Medicaid Inspector General (OMIG) audits and self-disclosure payments received in the 2013-14 state fiscal year – the $40 million is the state’s share so the total anticipated recoveries is $80 million.  This savings has no impact on rates.

•    $32 million from savings derived from movement of consumers from higher cost residential programs, including state institutions and out-of-state placements to lower cost.  Cost savings from avoiding "institutional" placements will also count. These savings might be characterized as "cost avoidance." The $32 million is state share and there will be federal Medicaid cost impact which would be at most another $32 million. This savings has no impact on rates.

•    $6.6 million savings achieved from moving 2,500 additional consumers to Medicare, thereby reducing Medicaid spending for medical services on the NYS Department of Health (DOH) side. This savings has no impact on rates.

•    $6 million from reducing voluntary provider payments for room and supplemental payments (currently $55 million per year) starting 10/1/13 based on surplus position across all OPWDD Medicaid programs. The 11% cut will be allocated to high surplus agencies (with adjustments for 2011 rate cuts). This cut is state only dollars so the total impact remains at $6 Million.

•    $2.6 million savings ($5.2 million state and federal combined) from reducing the administrative portion of voluntary provider rates for ICF, day hab and res hab programs. This will be implemented 10/1/13 together with rate rationalization.  OPWDD estimates that is a 1-2% reduction in the administration portion of rates.

•    $3 million savings from transitioning individuals from sheltered workshops to integrated community employment. This is about an 8% reduction in funding for sheltered workshops effective 10/1/13.

The total state share savings in the 2013-2014 state fiscal year is $90.2 million dollars. The total amount of funding coming out of the OPWDD not-for-profit system is between $91.2 million and $155.2 million dollars. This is in addition to the $350 million that has been cut since 2008. These annual cuts to not-for-profit organizations in the past five years totals over $500 million or more than 13%.

Al Shibley


Dr. Joseph Dutkowsky, a member of the Board of Directors at Cerebral Palsy Associations of New York State (CP of NYS) is the subject of a feature story on the April 12, 2013 edition of the Public Broadcasting System program, Religion and Ethics Newsweekly.

Dr. Dutkowsky discusses his work with patients with disabilities in rural central New York and major medical facilities in New York City. His practice focuses on those with cerebral palsy, and he is one of the rare physicians treating patients as both children and adults.

Dr. Dutkowsky is Associate Medical Director at the Columbia Cerebral Palsy Center; Associate Clinical Professor of Orthopaedic Surgery, Columbia University College of Physicians and Surgeons; President, American Academy for Cerebral Palsy and Developmental Medicine; Attending Orthopaedic Surgeon at Bassett Medical Center in Cooperstown, New York and an Associate Clinical Professor of Orthopaedic Surgery at Columbia University College of Physicians.

The eight-minute feature on Dr. Dutkowsky can be seen here.

Al Shibley


J. David Seay, Executive Vice President & Chief Legal Officer for Cerebral Palsy Associations of New York State, was among several panelists who spoke during a March 22nd symposium at Albany Law School commemorating the court order meant to guarantee better conditions and care for the thousands of people who lived at the former Willowbrook State School on Staten Island. The school was closed following a famous 1972 exposé by TV reporter Geraldo Rivera.

The closing of Willowbrook began a deinstitutionalizing movement in the state that many feel may be slowed or even reversed by cost-cutting measures undertaken by the state in recent years. Some of the speakers said they were worried that as New York continues to move people with developmental disabilities out of institutions and into community settings that there will be no place for them to go to live and receive services.

Some of the speakers told of the progress made during the decades since the court case that emerged from the scandal. But others warned of constant challenges, both financial and demographic, to the State's most vulnerable. Thousands of former Willowbrook residents are still living in the state and they, like others with and without disabilities, are living longer. That presents additional challenges. “People with disabilities have numerous health care challenges, and caring for them will grow more challenging as time goes on,” said Seay.

Al Shibley


The Weinberg Family Cerebral Palsy Center at Columbia University and United Cerebral Palsy of NYC will present a one-day conference dedicated to an in-depth examination of the environmental, physical and communication challenges that accompany Cerebral Palsy and complex care patients into adulthood. The conference will provide a core curriculum for the. Specialty Care Management of patients with Cerebral Palsy and will present updates in specific specialty areas of Stem Cells, Urology, Oral Health and Pain Management.  Joseph P. Dutkowsky, MD, a member of the CP of NYS Board of Directors, and David P. Roye, Jr., MD, David P. Roye, Jr., MD, Executive Medical Director, Weinberg Family Cerebral Palsy Center, will be featured speakers at the conference.

At the conclusion, participants will be better able to:

• Recognize manifestations/types of Cerebral Palsy
• Summarize and apply the GMFCS scale
• Discuss challenges to expect during the exam (physical, cognitive, communicative)
• Define and address barriers to effective care in complex patients
• Recognize the correct coding that is essential to building a Cerebral Palsy registry

Complete details, including schedule, Accreditation Statement, faculty and costs can be found here.

The Conference will be streaming live and archived for future views. On-line registration is required.

Al Shibley



Effective March 18, 2013, there has been an amendment to federal regulations relating to a district’s responsibility to obtain parental consent prior to billing Medicaid or other public insurance benefits for special education services. The amendment seeks to simplify procedures for district access to public benefits while at the same time continue to protect family rights.

Currently, schools are required to obtain parental consent for a specified amount of services over a specified period of time. A new request for parental consent must be sought when there is a change in Medicaid-reimbursable services or at least every school year.

The essence of the revision permits a “first time consent” from the parent to access the Medicaid benefits. Thereafter no further consent is needed to access Medicaid benefits; however the parent must receive an annual notice that benefits are being accessed by the school district.

The New York State Education Department (NYSED) will propose changes to its State regulations to conform to the federal regulations.  However, districts are advised that they must continue to comply with current State Regulations of the Commissioner of Education relating to access to public benefits or insurance until such time as the State amends its regulations.  It is anticipated that State regulations will be amended consistent with the new federal requirements by July 2013.

More information can be found here.

Judi Gerson


The Niagara Falls Elks Lodge #346 recently donated a custom-made adapted tricycle to Niagara Cerebral Palsy. The trike will be used by adults served by the non-profit agency. Elks Project Leader Donna Donahue conducted a special fundraiser to raise the money for the tricycle. John Reardon, NCP Executive Director/CEO (right), accepted the gift from (left to right) Donna Donahue, Ken Perry, Elks Exalted Ruler, and Patrick Donahue, Elks Loyal Knight.


Elks donate bike to Niagara CP

Al Shibley



Below is a link to a NY Daily News story about Bill Reilly, a CP of NYS staff member who has competed in more than 30 marathon races in his specially designed wheelchair. Bill competed in this week’s 117th annual Boston Marathon. He was still over a mile out from the finish line when the explosions occurred near the finish line on Boylston Street. Bill is doing well, back in New York and looking forward to his next race.

Al Shibley

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