Final Budget Includes Significant Investment In I/DD Field

April 8, 2022

From The ARC New York

The Governor and Legislature reached agreement on the New York State budget late last night, after extensive negotiations. This afternoon, the Senate and Assembly passed the Health and Mental Hygiene budget bill (A9007C/S8007C), which outlines the specific funding for our field, and realizes many of our initial advocacy priorities

The Enacted Budget includes a 5.4% cost-of-living adjustment (COLA), expanded eligibility of the Statewide Health Care Transformation Program (SHCFTP) to include community-based I/DD providers, and changes in language so our clinical staff can access the Nurses Across New York (NANY) loan repayment program. Yesterday, Governor Hochul mentioned an agreement to include $1.2 billion in bonuses for essential healthcare workers. This is the same amount appropriated in her Executive Budget, which included bonuses of up to $3,000 for Direct Support Professionals. We expect language outlining the direct care workforce retention bonuses will be released later today.

The final budget reflects and expands on the significant investment originally outlined in the Executive Budget. This is by far the largest investment New York state has made in the I/DD field in over a decade. Following the release of the one-house bills, we shifted our ask to support the Assembly proposal to forgo workforce bonuses in favor of an 11% COLA, which we saw as the most straightforward and effective way to allocate the funds committed in all budget proposals. Although we did not achieve the 11% COLA as proposed in the Assembly one-house bill, we were successful with our initial request – and in securing recognition of the crisis we are facing and the need for substantial investment in the I/DD field.

This success is due in no small part to the ardent advocacy from The Arc New York family. Since last summer, we have held rallies, garnered media attention, engaged with our legislators, and sent more than 17,000 letters calling for significant and sustained investment in essential supports and services for New Yorkers with I/DD. Our voices have finally been heard.

With this budget, the Hochul administration and the legislature have demonstrated a commitment to the voluntary provider sector, our direct care workforce, and the individuals and families we support. These investments are only the start of a much larger conversation about how to adequately fund equitable wages for our dedicated workforce, and ensure sustained investment the New York’s system supports and services. Our fight isn’t over, but the landscape has shifted, and we will continue to raise our voices together to achieve lasting support and solutions.

We will continue to advocate for a DSP Tax credit, which was not included in any of the proposed budget. The Education, Labor and Family Assistance (ELFA) Article VII budget bill and Aid to Localities, Capital Projects, and State Operations appropriation bills have yet to be introduced. We will provide necessary updates as bills are introduced and budget language is analyzed.

On behalf of The Arc New York, we thank each of you for your advocacy and your tireless contributions toward realizing our shared mission to provide New Yorkers with disabilities the ordinary and extraordinary opportunities of life!

NYDA Lawsuit Successful

In a State of New York Supreme Court stipulation of dismissal without prejudice agreement reached between NYDA providers and NYS, the State has agreed to not retroactively implement their proposed IRA and day hab rate reductions which were scheduled to take place in 2020 (and moved to 2021). These reductions included the elimination of the IRA occupancy factor, the reduction in the number of IRA therapy days, and the reduction of retainer and therapy day hab payments.

The State has also agreed to file an amended Appendix K if needed to propose a delay to those provisions until six months after the end of the federal public health emergency declared by the DHHS.

Should CMS not approve the Appendix K amendment, the State has also agreed to not retroactively recoup any funds from providers as it relates to these proposed reductions for the period of time in which the rate cuts were not implemented.

This is at least a temporary win for the providers but they could face these reductions in the future as indicated above.

Hospital Visitation Guidance

With the uptick in Covid-19 cases and the upcoming flu season, ENYDDA wanted to make sure all of our members had access to the current OPWDD guidelines regarding visitation during the hospitalization of any one with developmental disabilities. Below is the link to OPWDD’s guidance that was issued on 6/7/21 and remains in effect currently.

OPWDD Announces Federal Approval

OPWDD Announces Federal Approval of New Changes to Appendix K
November 18, 2021

Essential Investments In Direct Support Workforce Coming Soon

Dear Friends and Colleagues,

The Office for People With Developmental Disabilities (OPWDD) is pleased to announce federal approval of new changes to the OPWDD Appendix K which will allow for essential investments in the direct support workforce of our service providers. OPWDD is making these needed investments to help immediately address the workforce shortage our service system currently faces.

The new investments include:

COVID-19 Workforce Performance Incentives

Workforce Longevity and Retention Bonuses

COVID-19 Vaccination Incentive Payments

The Appendix K is a set of changes applied to the OPWDD Comprehensive Home and Community-Based Services (HCBS) Waiver to address COVID-19. Federal approval is an important step in providing the workforce investments included in the NYS American Rescue Plan Act Spending Plan and will allow OPWDD to begin distribution of financial resources to provide relief to Direct Support Professionals and Family Care providers.

OPWDD will begin implementing these provisions immediately by providing additional information to provider agencies and fiscal intermediaries (for the incentives and bonuses to be distributed to self-directed staff).  OPWDD will ask providers to complete a survey about their DSP workforce so that appropriate Workforce Performance and Vaccination incentives can be calculated. We will also ask providers to complete an attestation that the funds will be used as intended for DSPs and Family Care providers. Longevity Bonus payments will begin to be paid out following the return of a completed attestation; the Retention Bonus payment will be paid later this state fiscal year. Providers are being asked to work quickly to return the necessary information to OPWDD. We expect to be able to release the Incentive Payments in early 2022 provided that we have all the necessary information to do so.

An informational webinar will be held following the Thanksgiving holiday to help inform people further about the payment process. Details will follow next week.

Thank you for your continued advocacy.  We look forward to making these and other important investments in Direct Support Professionals to help resolve the current workforce shortage.

Sincerely,

Kerri E. Neifeld
Acting Commissioner

At this time, these disbursements are only available to family care providers and direct support workers who are employed by voluntary service providers, including staff who deliver services under the self-direction program. Discussions are ongoing regarding state employed direct support workers.

Letter to Commissioner Neifeld

November 14, 2021
Dear Commissioner Neifeld,
ENYDDA is an independent, all-volunteer organization of parents, families and self-advocates for intellectually and/or developmentally disabled individuals from across the Capitol Region. Our families and their loved ones represent the full spectrum of those with intellectual and developmental disabilities (IDD), from those who are largely independent and self-sufficient, to the profoundly disabled requiring full care 24/7, and everyone in between, encompassing myriad diverse conditions, causes, complexities and care. Our sole mission is to educate and inform policy makers, the media and the public on issues impacting our loved ones. ENYDDA receives no government or service-provider money; its activities are entirely self-supported.
We would like to extend an enthusiastic welcome to you, our new commissioner. As you undertake this awesome responsibility, we want to take the opportunity to share some thoughts with you.
As you well know from your time in chamber, the system is challenged as never before. Some of the issues that we know you will have to deal with are:
 Managed Care – ENYDDA does not support the transition of Long Term Services and Supports (LTSS) to managed care regardless of whether or not the Managed Care Organizations are provider led. However, even those who support managed care must recognize that we have to stabilize the system before we impose a change that will require all providers to invest their time and resources into navigating a new managed care system rather than invest in providing services.
 The Workforce Crisis – ENYDDA and our fellow advocacy groups are grateful that the need to invest in the workforce is recognized. We support the use of eFMAP funds to increase wages and we are pleased to see the that a continued investment is being discussed in the legislature. Still, money alone won’t solve the workforce crisis. There is already a tsunami of unmet and under met needs and demographics assure us that these needs will only grow for the foreseeable future. We must innovate. We must use the workforce more effectively and efficiently.
 High Needs Individuals – Serving those with the highest needs remains an extraordinary challenge. Efforts to modify residential reimbursement rates that are based on acuity must continue to move forward. There are many reasons why NYS has failed in these efforts. For the last ten years little has been done in this and so many other areas as the promise to solve all problems with managed care ruled the day. We need to understand how to better serve those with high needs.

 Expanding Residential Opportunities – We are not going to solve our current and future residential needs unless we expand the choices of services and supports. We must try and retry other models of residential supports to increase residential choices and services.
 Self-Direction – With over 20,000 consumers using self-directed services, we must take a hard look at the weaknesses in our current self-direction model. Until we can answer the question – ‘How does my child’s self-directed program continue after I’m gone?’, self-direction is a temporary solution for many.
The above is only a short sampling of the issues that you will face. What is the future of State Services? What should be the future of IBR? How can OPWDD work more effectively with other agencies? How can services be better coordinated between OPWDD and SED? How does OPWDD empower providers to be more efficient and effective? What is the appropriate role for the CCOs? And on, and on, and on…….
So we’d like to offer a few words of encouragement and advice.
 Be Our Champion – The individuals and families that OPWDD serves will be your greatest source of support if you are ours. In chamber, you had to balance the needs of the many populations you served against the aims and objectives of the governor’s office. At OPWDD you need to be our voice competing with all of the other well-deserving interests.
 Be Transparent – The complexities of OPWDD are extraordinary and it’s understandable that you would want to keep your head down, roll up your sleeves and get to work. But the uncertainty we face is exacerbated by the black box that is CAS; the changing service authorization; the introduction of utilization review; the unseen algorithm. We know we are facing difficult times and we want to be part of the solution but it’s hard to help when you’re kept in the dark.
 Have High Expectations – NYS used to be a leader in providing services to those with I/DD and can be again.
 Let Us Help You – In spite of the long history of committees, panels, work-groups, public hearings and comment periods, family and self-advocates often feel that they are merely used as window dressing. You are awash in a sea of experts, both internal and external, with established institutions and agendas whose voices are amplified by paid lobbyists and P.R. firms. We understand that the diversity of opinions and approaches that you will find the in advocacy community can be frustrating, but we are in transformational times, and our families and self-advocates are here to help.
Yours respectfully,
ENYDDA Steering Committee
The Eastern New York Developmental Disabilities Advocates (ENYDDA, or “any day”) is an independent, nonpartisan, all-volunteer organization of parents, families and developmentally disabled individuals in the greater Capitol Region and eastern upstate New York. Our mission is to educate and inform policy makers, the media and the public on issues impacting our disabled children and loved ones. ENYDDA receives no government or service provider money; its activities are entirely self-supported.

A Letter to Senator Stewart-Cousins and Assemblyman Heastie

March 10, 2021
Senator Andrea Stewart-Cousins Assemblyman Carl Heastie
President Pro Tempore and Speaker
Majority Leader New York State Assembly
New York State Senate
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 for 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
cc: Senator John Mannion,
Senator Liz Kreuger
Senator Robert Ortt
Senator Gustavo Rivera
Assembly Member Thomas Abinanti
Assembly Member Helene Weinstein
Assembly Member Aileen Gunther
Assembly Member. Richard Gottfried