Category Archives: Advocacy

URGENT: STOP MEDICAID CUTS NOW

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URGENT!
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)

THE BILLS CURRENTLY IN CONGRESS CUT MEDICAID TO THE BONE

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.

ASK YOUR RELATIVES AND FRIENDS TO MAKE THESE CALLS TOO

BE SURE TO FORWARD USING ICON BELOW OR VIEW IN BROWSER OR FORWARD THIS PDF

 

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

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STATEMENT OF QUALIFIED SUPPORT

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

 

PURPOSE OF THE BILL  

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.

 

SUMMARY OF THE ISSUE –

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.

 

POSITION OF NYC FAIR

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.

 

 

 

NYC FAIR 911 RESPONSE: S.4736-A/ A.6830

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BILL SUMMARY – S.4736-A/ A.6830 would: 1) require that any actual or alleged incident of abuse or neglect of a person with a disability or special needs in the care of a facility or service provider, must be reported by employees and volunteers of such facility or provider to not only the Justice Center’s Vulnerable Persons Central Register, but to a 911 operator and the county district attorney’s office; 2) raise the penalty for the failure of any employee to make such reports from a misdemeanor to a Class E Felony, and would also subject both employees and volunteers to civil action; and 3) expands the current exceptions to the confidentiality protections for the private records of disabled persons in such cases to include mandatory access by local police and the District Attorney.

WE OPPOSE THE BILL AS IT CURRENTLY STANDS: – As parents and families we are deeply and directly worried about the safety and well-being of our disabled children and loved ones. We understand the motivation behind this legislation and support its objectives. However. we oppose this legislation in its current form, as it is likely to create more harm than it will prevent.

1) The bill is overbroad by requiring all reportable incidents, as defined in law, to be reported to 911 and law enforcement officials. As parents we know, as few do, that the care of the disabled involves managing, day after day, people who have all kinds of physical, emotional, and/or behavioral issues. Accidents and incidents can occur in the normal course of a day, but only some will rise to the level of seriousness necessitating a call to 911. The law currently requires that incidents that occur in the care of defined facility or service provider be investigated by the provider, reported to the Justice Center for investigation, and forwarded to law enforcement where appropriate. We know, statistically and from personal experience that the vast majority of these incidents turn out to be relatively minor, routine, accidental or simply false. To make each of them the subject of an emergency response call and a criminal investigation is an overreaction. It will result in a dangerous waste of critical emergency and law enforcement resources (who are often not trained to deal with the developmentally disabled), the time and energy of vital caregiver staff, and needlessly disturb, upset and inconvenience the disabled individuals themselves. Over time, it may lead to a sense of equivalency or apathy if something really terrible does happen,

2) Caring, capable, compassionate and desperately needed workers are already leaving the profession, and many others are choosing not to enter it. Even the current requirements make it difficult to attract and retain workers, and often result in an over-cautious approach by those now working in the field to the point that it is negatively impacting the care of our children. The threat of brining in law enforcement on low level incidents adds another disincentive.

3) The broad additional exception to privacy protections afforded to the disabled on a wide range of medical, psychological, therapeutic and other personal information will be an unnecessary, invasive, and discriminatory violation of their privacy. These are some of the reasons why NYC FAIR opposes this legislation in its current form. We respectfully request that you vote no on this bill.

Respectfully,

NYC FAIR

NYC FAIR 911 response (1)

 

 

Jason Helgerson, NYS Medicaid Director Meets NYC Families on 6/12

Action Alerts, Advocacy, nyc fair, , , , ,

MEDICAID CHANGES IN STORE: WHAT WILL HAPPEN?

How Will the Dollars Be Allocated?

HEAR FROM THE PERSON WHO WILL DECIDE


JASON HELGERSON
New York State Medicaid Director 

MONDAY, JUNE 12th
6 – 8pm
IAC
150 West 30th Street, 15th Floor

Here are some of our questions:

How will changes to the Medicaid dollars affect our families?
What are the plans for Managed Care for people with ID/DD?

 

SUBMIT YOUR QUESTIONS HERE: Questions@nycfair.org

 

These two articles lay out the situation

How Will Trump’s New Plan to Replace Obamacare Affect You? U.S Economics

Trump Budget Guts Medicaid, Disability Programs Disability Scoop

REGISTER WITH NYC FAIR:

http://bit.ly/2qwUSoC

Be patient with the link

INDICATE YOUR LOCATION PREFERENCE
ON THE REGISTRATION FORM

  • VIDEO CONFERENCING WILL BE AVAILABLE AT THESE OTHER LOCATIONS FOR THE MEETING WITH JASON HELGERSON
    Staten Island: PCCS, 150 Granite Ave, SI, NY
  • Nassau County: FREE, 191Bethpage – Sweethollow Road, Old Bethpage, NY
  • Rockland County: The ARC of Rockland, 25 Hemlock Drive, Congers, NY
  • Ulster / Greene Counties: 471 Albany Ave., Kingston, NY
  • Suffolk: DDI, 99 Hollywood Drive, Smithtown NY.Call- In #: 646-780-0451, PIN: 314-512-500 #  

Translation Available if Requested Before June 1st

Light Supper

For Policy Wonks: Also on June 12th, from 10:30 – Noon:
Mr Helgerson will attend the Medicaid Advocates Meeting. It deals with more technical and large-scale policy issues. Agenda items include DSRIP and Self-Direction.
Here are detailed instructions to attend this meeting and the proposed agenda.

A MORE GENERAL DISCUSSION OF HOW MEDICAID MAY IMPACT PEOPLE WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES WILL TAKE PLACE IN THE EVENING

Coming Next Week:

Information about pending legislation concerning: Changes in Justice Center Reporting, Changes in 17A Guardianship Rules, the FAIR ACT, AND the implications of the proposed federal budget to programs for IDD.

“NYS Legislature, Governor Agree To Make Initial Investment in Disability Provider Workforce

Action Alerts, Advocacy, In The News

Representing More Than 250 Provider Agencies in New York State

March 29, 2017

TO:      COPA Members

NYS Legislature, Governor Agree To Make Initial Investment in Disability Provider Workforce

In what turned out to be a celebration of direct support professionals yesterday in the State Capitol, Governor Cuomo and the leaders of both Houses, along with the Mental Hygiene Committee chairs, promised a group of bFair2DirectCare demonstrators that they all support the addition of funds to increase direct care salaries.  The Governor said he would not sign a budget that didn’t include $55 million (this includes mental health and substance abuse workers) for direct care workers. Senate Majority Leader John Flanagan, Assembly Speaker Carl Heastie, Senate Independent Democratic Conference Leader Jeff Klein, Senate Democratic Leader Andrea Stewart-Cousins, and Assembly Minority Leader Brian Kolb were all unified in their support and all commented on the effectiveness of the campaign and the unanimity it evoked among legislators.  The Governor noted that this funding would come on top of the increase provided to bring workers up to the minimum wage. This agreement will provide an additional 6.5% wage increase over the next two years for lower paid workers.

The announcement was made as the bFair2Direct Care Coalition held an event at the State Capitol to thank all the Legislative Leaders and give them “There for Direct Care” awards.  This event is the culmination of more than a year-long, statewide bFair2DirectCare advocacy campaign conducted by all nine developmental disability associations across the State working to get funding to mitigate one of the key issues, low wages, which contributes to the disability field’s recruitment and retention crisis.

Staff, family members, self-advocates, board members and volunteers from our agencies have worked hard to educate their representatives in Albany about the desperate need for this funding.  State Senator Frederick Akshar called the campaign, “the greatest grass roots effort I’ve ever witnessed.”

COPA would particularly like to thank the families and staff from our member agencies for their active participation and dedication in this movement.  On behalf of all the organizations involved in this campaign, we thank the leadership in the Senate and Assembly for their unwavering support of our dedicated and highly professional staff, and to the Governor and his staff for their work with the Legislature on this critical issue.

While there is no guarantee of the precise details until the budget is passed, today’s announcement essentially ensures the budget will include a 3.25% increase in salaries for low wage employees effective, January 1, 2018, with another increase of 3.25% for low wage and clinical employees effective 4/1/18.  These increases are in line with the $45 million per year State share, $90 million annually, that was part of the living wage proposal so strongly advocated for by COPA and the others working in the bFair2DirectCare campaign.  (The $55 millionState investment announced by the Governor reflects the expansion of the investment to cover OMH and OASAS programs as well for the same group of employees.)  COPA and its members really stepped up their advocacy efforts over the past 9 months, and it is those efforts, along with those of other disability providers, families, and staff, who made this campaign a success.  We will be sending additional details on what is in the budget once it has passed, but this funding announcement is certainly good news and a long time in coming.

This announcement marks the first two steps towards the goal of providing direct care and other low-wage workers in our field a living wage. The plan that spurred the Legislature and Governor to action calls for an additional $45 million investment by New York State in each of the next five year.
Barbara, Wini & JR

 

 

BARBARA CROSIER 
Vice President, Government Relations
Cerebral Palsy Associations of NYS
3 Cedar Street Extension, Suite 2
Cohoes, NY 12047
Phone:   (518) 436-0178, Ext. 104
Cell:        (518) 424-3198
Fax:          (518) 436-8619
E-mail:     bcrosier@cpofnys.org

 

WINIFRED SCHIFF
Associate Executive Director for Legislative Affairs
InterAgency Council of Developmental Disabilities Agencies, Inc.
150 West 30th Street   15th floor  
New York, NY  10001
Phone:   (212) 645-6360
Cell:        (917) 750-1497
JOHN R. DREXELIUS, JR.
Government Relations Counsel
DDAWNY
Law Office of John R. Drexelius, Jr.
PO Box 141
Buffalo, NY  14223
Phone:   (716) 316- 7552
Fax:         (716) 875-7552
Email:     jrdrexelius@gmail.com

 

 

COPA – Coalition of Provider Associations

Alliance of Long Island Agencies, Inc. ¨ Cerebral Palsy Associations of New York State  ¨  Developmental Disabilities Alliance of WNY, InterAgency Council of Developmental Disabilities Agencies, Inc. ¨ New York Association of Emerging & Multicultural Providers, Inc.3 Cedar Street Extension, Suite 2

Cohoes, NY 12047
(518) 436-0467
info@copanys.org
www.copanys.org