Category Archives: Action Alerts

“Keeping The Promise” Letter from Laura Kennedy


On behalf of Laura J. Kennedy, President, NYSARC, Inc.:


Dear Family Members and Friends,

During the last ten years, it has become increasingly difficult for people with intellectual and developmental disabilities to secure the residential placements they need to live safe, secure, and independent lives in their communities.Additionally, families throughout the state live in a perpetual state of anxiety that despite their advancing age and possible infirmity there is no assurance that anything other than a family catastrophe, including the death of a family caregiver, will be sufficient to justify an appropriate residential placement.

This problem only seems to be getting worse. According to a recent report by OPWDD, there are thousands of individuals who now need, or will need, permanent housing. In response to this growing housing crisis, parents and advocates have developed this Report To The Governor which describes the urgent problem and requests that the Governor expeditiously address it.

For all those who believe that we must resolve this issue, please  Read the Report to the Governor: “Keeping the Promise”and sign our online petition. We need thousands of names to bring this matter to the attention of the public, the press, and especially the Governor in preparation for the FY 18-19 State Budget.

For over half a century the united voice of families, parents, and friends of people with intellectual and developmental disabilities has helped ensure that they are never forgotten. During a period in our nation’s history when human needs are under siege the voice of our families, friends, and advocates throughout the state has never been more important.

Again, we urge you to Read the Report to the Governor: “Keeping the Promise”  and sign our online petition and ask that all of you who care about our families and their loved ones to do the same.

Thank you for your support!


“Keeping The Promise” FINAL

For Your Information:

There is a report called “Keeping the Promise” about residential needs in New York. It’s important that everyone have a chance to read it and decide for themselves whether or not they want to add their name to the petition.

Letter On behalf of Laura J Kennedy

Report to the Governor: “Keeping the Promise”


We Need To Stop Medicaid Cuts

Please Make 7 Quick Calls Immediately!

Call & FAX
Representative Chris Collins P# 202-225-5265 F#202-225-5910
Representative John Faso P# 202-225-5614 F# 202-225-1168
Representative Peter T. King P# 202-225-7896 F# 212-225-2279
Representative Tom Reed P# 202-225-3161 F# 202-225-6599
Representative Elise Stefanik P# 202-225-4611 F# 202-225-1391
Representative Claudia Tenney P# 202-225-3665 F# 201-225-1891
Representative Lee Zeldin P# 201-225-3826 F# 202-225-3826

Medicaid funds 90% of NYS services for people with Intellectual & Developmental Disabilities (IDD)


NY Senators Schumer and Gillibrand already oppose AHAC
(American Health Care Act)
but many of our Representatives support it


We need to MAKE IT CLEAR to these Representatives that Medicaid cuts ARE A THREAT TO PEOPLE WITH ID


Here is a suggested script:

My name is __________. I am the parent/relative/friend of a person with developmental disabilities. I am calling to ask you to oppose any legislation that cuts or caps Medicaid. Medicaid funds 90% of essential services for people with developmental disabilities. Medicaid cuts seriously endanger our loved ones.




STATEMENT OF QUALIFIED SUPPORT – S.5842 /A.5840(Hannon/Lavine)


S.5842 /A.5840(Hannon/Lavine)



S.5842/ A.5840 would amend the Surrogate Court Procedure Act (SCPA) with respect to the Article 17-A Guardianship provisions in an effort to peremptorily address pending legal challenges to the constitutionality of the statute, as well as to update certain language and other provisions.



We, as parents and family members, comprise the vast majority of Article 17-A Guardians in New York State.  Article 17-A guardianships are specifically used for individuals living with an Intellectual or Developmental disability that began prior to age 22, including disabilities attributable to cerebral palsy, neurological impairment, autism, and those diagnosed with a traumatic brain injury.

Art. 17-a Guardianship petitions must be accompanied by two certifications by physicians (or one physician and one psychologist) that the disability exists and is permanent or likely to continue. The process is relatively simple and streamlined in comparison with the Mental Hygiene Law Art. 81 Guardianship, and can be done without an attorney.

Art. 17-A guardians are granted broad authority to make decisions on virtually all aspects of their ward’s life, including personal, medical and financial decisions.

Art. 81 Guardianship is tailored to the specific needs of the individual and grants no more power to the Guardian than is necessary.

Over time a number of court rulings have focused on the lack of specificity and flexibility of Art.17-a Guardianships. More recently a group called Disability Rights New York has challenged the Art. 17-A statute in Federal Court arguing that it can be, at least in some cases, a violation of the disabled’s right to due process regarding the notice of the filing of the petition and the overly broad scope of the Guardianship, among other things. That case is now pending in Federal court. We are concerned that if successful that case could, at worst, invalidate or at best create a confusing situation about all existing 17-A Guardianships.



The current Article 17-A Guardianship statute is an extremely effective, relatively simple means of protecting the safety, well-being and best interests of people with Developmental and Intellectual disabilities because there is oversight by their families and loved ones. Tens of thousands of families depend on these Art. 17-A arrangements. It is therefore vitally important that the NYS Legislature act to modify the law so that it will pass constitutional changes in order to avoid the possibility of the law being invalidated which would throw the status of existing Guardianships into question.


NYC FAIR generally supports the purpose and intent of S.5842/A.5840 to address potential constitutional issues and to update the statute. Therefore we urge the legislature to take such action soon, before the end of the current session.


However, it is imperative that any revisions address the following family concerns:


  • That existing 17-A Guardianships, their terms and provisions, including those relating to designated stand-by and alternate guardians, be “grandfathered” in and remain in full force and effect;
  • That no new additional reporting requirements be imposed on families already heavily burdened with the care and management of their disabled loved ones;
  • That any role played by the office of Mental Hygiene Legal Services as counsel to a potential ward be clarified and limited to the gathering and reporting of evidence as to functioning level. This should be determined by the Surrogate, rather than having the office of Mental Hygiene Legal Services making any such determination itself. They have no training or expertise in understanding the disabled therefore they should not sit in judgment on the case.