Action Alerts

We demand that IBR remain under OPWDD and remain here on Staten Island as promised!!!
This is going to affect all the families withchildren with developmental disabilitiesas well as medically fragile children onStaten Island
Below is a copy and paste letterfeel free to edit to fit your needs.

Good morning Governor Cuomo.
I am writing to you today to express my concern at the potential merger of the Institute for Basic Research (IBR) with the Office of Mental Health.  IBR as you are aware falls under the auspice of OPWDD, which makes sense since it is for the Research of Developmental Disabilities’ not mental health. As well as turning the Jervis Clinic over from OPWDD to OMH.
I would like to voice my opinion and say that as an advocate, as well as a parent of and for families of children withDevelopmental Disabilities here on Staten Island, that this decision, which would lose all our scientists to the city, would be detrimental to the Staten Island Community.  
It may result in those scientists based in Staten Island who are of retirement age to choose to retire. A monumental loss to the research world in the field of Developmental Disabilities. And the potential closure of the Institute for Basic Research.
In addition Parents on Staten Island rely on the Jervis Clinic for their children’s needs, from evaluation to lifelong care, and for service eligibility for patients referred from OPWDD. The children seen in the Jervis clinic have moderate to profound intellectual disabilities and/or severe autism, and this group of children and family members is very different from other patients seen within OMH. Parents rely on the office of OPWDD to provide services for their children and family members. Merging with OMH will simply stop families from using the Jervis Clinic. The Jervis Clinic as well as IBR are such vital entities in ensuring that these children can live long and full filling lives and become productive members of our community.

I feel as if Staten Islanders have been blindsided by this potential merger, as it is currently in the upcoming State Budget, and Staten Islander’s whom you represent have not been given a chance to voice their opinions through public forums, public discussions on this matter at all.
(your name/signature, with your address)
The link below will take you to a submission form that must be filled out. please select HEALTH in the topic drop down menualso please put : IBRDD merger with OMH/NYSPI in the subject line.
I submitted mine already so it will take this entire letter.

Call to Action: Vaccine Priority for New Yorkers With I/DD
Nearly 100,000 New Yorkers with intellectual and developmental disabilities (I/DD) supported and served in community-based settings have yet to be placed within a priority vaccination group. In response, The Arc New York has launched a state-wide grassroots campaign, sending the message to all state and federal representatives that all people with I/DD should receive Phase 1 vaccination priority. To add your voice to this important initiative, follow this link, provide your information, and the letter will be sent right to your representative’s email.

Senator Stewart-Cousins and Assemblyman Heastie,
As members of the organizations listed above, groups of families and concerned individual advocates, we are closely following the current New York State budget process on behalf of those with Intellectual and Developmental Disabilities.   Some of us provided testimony at the Joint Legislative Budget Hearing on Mental Hygiene and held a Virtual Town Hall for families and individuals on the impacts of the Governor’s Budget proposals. We continue to advocate for the roll back of the cuts and underfunding in the Budget for programs run by OPWDD(Office of People with Developmental Disabilities)  that, if not addressed, will result in the continued loss of services for those with IDD, some of the most vulnerable in our population.
We strongly urge you, as our legislative leaders, to restore funding for OPWDD in the Governor’s IDD Budget. The focus of IDD advocates across the State is as follows.  One involves OPWDD sharing in the increase in Medicaid funds the state is currently receiving and the other calls for the reinstatement of the COLA.
First, the state has received a Pandemic enhanced FMAP (Federal Medicaid Assistance Percentages) match which based on OPWDD spending is estimated to be over $252 million.  Yet the Not-for-Profit providers have received zero dollars from this FMAP increase.  This inequity needs to be addressed.  These FMAP funds could eliminate the cuts to OPWDD’s supports and services that began during the last year.  Additionally, the additional FMAP increase for HCBS (Home and Community Based)services in the current federal stimulus legislation should be spent on OPWDD’s HCBS programs as intended by Congress.
Second, now is the time to address the continued deferral in the Budget of the statutory COLA for all OPWDD service sectors.  This COLA could begin to address the continued pressure on service providers which has been exacerbated by years of underfunding, the unreimbursed expenditure on PPE costs and the costs incurred to keep vital programs up and running.
We appreciate the complexity and difficulty of addressing all of the state’s needs.  As you evaluate the Governor’s budget for OPWDD, please recognize that these proposals will protect the services and supports on which people with IDD depend. We urge you to act on these proposals.
Thank you for your service on behalf of all New Yorkers. 
 Elly Rufer on behalf of Self-Advocates and Family Groups Representing Individuals with Intellectual and Developmental Disabilities across New York State.