It’s time to get on the train

When Gov. Andrew Cuomo took office in 2011, one of his first acts was to form the Medicaid Redesign Team (MRT), bringing thought leaders from around the state to overhaul New York’s unwieldy Medicaid system, which was realizing expenditures of $54.6 billion dollars (including state and federal obligations) covering 5.5 million recipients. It was also assumed that by the end of 2011, there would be a 15 percent growth in the number of eligible participants enrolled in the program. The major theme of the MRT’s plan was to bring costs more in line and to enroll each recipient in managed care plans for all their Medicaid services.

From the outset, the 135,000 people enrolled in long-term care services with the New York State Office of People with Developmental Disabilities (OPWDD) were exempted from enrolling in managed care plans until a special federal waiver covering them could be negotiated. For reasons too numerous to mention, including bureaucratic bungling and mistrust on all sides, this has not yet happened. Instead, what has happened in this inexorable “Waiting for Godot” time period is fear and loathing of the inevitability among persons supported, their families and the provider community that serves them. The very thought of change from the full array, but extraordinarily expensive services that have been developed over the past 40 years, has led all of us to simply want to say no. Parent groups, trade associations and advocates everywhere have gone to every legislative hearing, government forum or public meeting and talked incessantly about how the future holds nothing but hopelessness, lost services, and people with developmental disabilities facing a life of loneliness or being warehoused in nursing homes with little or no activities.

Frankly, this has befuddled government policy-makers, who believe they are taking steps to insure there is a future of service delivery for all persons with intellectual and developmental disabilities (IDD) that depend on us. To complicate matters, while trying to figure this out, the government changed course and decided that prior to any long term solutions, New York state had to enact a Transformation Agenda to comply with federal mandates. This involves downsizing some group facilities and relocating some programs, eliminating workshops, among other things, to fit the federal definition of community. The service provider community’s reaction to all this is to further withdraw from meaningful interaction and to mistrust all communications coming from state agencies which, admittedly, have lost much control of their own destiny.

One of my mentors once said something I’ve never forgotten when it comes to dealing with government at all levels: “If the train is coming down the track, don’t stand in front of it, get on it.” I think now would be a good time. It’s time for the provider community, families, advocates, self- advocates and others to articulate the safeguards, options and choices that must be part of any system, regardless of who the payer is or who’s making policy. We must embrace the fact that  whether we agree or not, change is going to happen. We have to stop articulating what we don’t want, what’s not going to work, and focus on how we can make it work.

We have been very fortunate in New York to have a responsive service system that has put billions of dollars into services and programs for persons with IDD where virtually everyone can get what they need. We must come together to ensure that continues for the next generation. Different doesn’t mean less. Different means we make it work like we always have. Otherwise, these systems will be developed with only the appearance of input from us and we will have squandered an opportunity to have meaningful dialogue. I’ve been to countless forums where my colleagues and families pepper government officials with questions about how the new system will work and then express great skepticism when they cannot be answered with specific plans and directions. It’s as much our job to create those pathways as theirs. There will be constraints, but there always were. Right now, provider agencies serving persons with IDD in New York are looked at by all levels of government as just whining that we need to keep everything as it was. The truth is we created this current dilemma ourselves.

When New York became the 47th state to adopt the Home and Community Based Waiver in 1994, it was expected that we would use the regulatory relief to create new and innovative service models. We didn’t. We renamed the ones we had and got paid more money to do it, with the by-product of sending executive compensation through the roof.

We have another opportunity to be creative. Let’s not miss the boat by embracing the past and fearing the future.

Edward R. Matthews is Chief Executive Officer of United Cerebral Palsy of New York City.