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.
ENYDDA 