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NJ's I/DD community strongly opposes the state's transition plan: now what?

Yesterday, I saw democracy in action.

At least, I hope I did.

On February 19, I attended the second of two public comment sessions organized by New Jersey’s Department of Developmental Disabilities (DDD) to solicit feedback on the state’s version of the CMS (Centers for Medicare and Medicaid Services) Final Rule defining the residential and vocational settings that will be eligible for funding through the Medicaid HCBS (Home and Community Based Settings) waiver. I’m not sure exactly how many people were in attendance, but I’d have to guess at least 250; the huge auditorium was packed. Thirty-six people spoke during the two-hour meeting, and so many more wanted to present that when the deputy commissioners ended the proceedings, there were angry protests from the audience.

I also went to the first session, so I have a pretty comprehensive understanding of the public response to the new regulations – which was overwhelmingly negative. Of the fifty or so people who testified at both hearings, only two spoke in favor.

These opponents were a diverse group, including individuals with developmental disabilities, parents, siblings, providers, and advocates. But certain themes emerged:

  • That perhaps the state had not acted in good faith by failing to notify present and potential waiver recipients of the proposed changes by letter or email blast; by scheduling the first of only two public comment sessions the day after the plan was released, before stakeholders really had a chance to wade through it (that session fortunately had to be rescheduled due to snow); by organizing far fewer opportunities for public comment than other states; and by overall neglecting to solicit the input of individuals with disabilities, their families, and the providers that serve them before crafting the regulations in the first place
  • That New Jersey’s plan to exclude congregate settings serving more than six people and to mandate that no more than 25% of the units in all apartment buildings and communities be occupied by waiver recipients unfairly precludes individuals with disabilities from choosing to live wherever and with whomever they please – a right freely enjoyed by those of us without disabilities
  • That the proposed requirement that day program recipients spend 75% of their time offsite in the community is expensive and impractical – particularly for those with severe medical and behavioral challenges
  • That countless individuals, finally thriving on campuses, farmsteads, or sheltered workshops, would be needlessly uprooted (“It took me 18 years to find the right program for my daughter,” one mom stated. “I’m 72 years old – I don’t have another 18 years.”)

It was, in short, a clear rejection of the state’s proposal. The only part that was unclear was why New Jersey opted to depart so dramatically from CMS’ decision to “establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics.” In other words, New Jersey’s plan is much more restrictive than the Final Rule, which includes no caps, density rules, or setting exclusions. Why write regulations that not only require tremendous effort and expense to implement, but are considered a dangerous overreach, if the comments at the public hearing are any indication, by the very population they are intended to help? (No one I spoke to had a good answer for this; if anyone has an explanation, there are a lot of folks who really want to know.)

But this is where the democracy part comes in. CMS required the states to invite public input, and the New Jersey disability community responded, almost unanimously demanding more flexibility, more choice, more transparency. It is incumbent on the DDD to listen to those most affected by these regulations and revise accordingly. This isn’t just a local issue – every state is going through the exact same process right now, which is why executives from two of the most prominent autism groups in the nation, Autism Speaks and the Autistic Self-Advocacy Network (ASAN), testified at these sessions. It’s not too late, New Jersey, to craft regulations that will encourage community integration while preserving a range of settings to reflect the broad preferences, needs and impairments of this population. The entire country is watching.