The Division of Developmental Disabilities (DDD) sponsored three “listening” sessions on the State Transition Plan (STP) as mandated by the Center for Medicare and Medicaid Services (CMS) during the first two weeks of August. The submission of an STP is required by every state in order to be in compliance with CMS recommendations on Home Based and Community Services (HCBS). Among the issues related to the STP are community integration and CMS concerns about “institutional-like” settings for residents that will require “heightened scrutiny” by the State.
At the meeting in Hamilton on August 10th, a clearly-concerned audience composed of service providers, advocacy groups and families voiced reservations about the NJSTP in its current version. Most speakers named density requirements for housing as the most serious issue: under the plan to be re-submitted to CMS, there are rigid restrictions on the density (25%) “allowed” for settings under development or new construction that meet the definition of a setting “presumed to have institutional-like qualities” and the new setting must be “operational”. It was pointed out that this effectively eliminates the possibility of innovative solutions to residential waiting lists, as it imposes conditions contrary to market realities: no developer can afford to take such an economic risk. It is a policy that makes New Jersey’s Plan one of the most restrictive STP’s in the nation according to some advocates for people with intellectual and other developmental disabilities (I/DD).
What stood out was the uniformity of responses- there was very little distinction between what service providers, advocacy groups and family representatives said concerning needed improvements to the Plan. In addition to density, reasoned arguments were made that:
- Administration of programs will consume disproportionate resources
- Higher levels of services are required for some residents; ‘integrated’ models are not one-size-fits-all and carefully designed safeguards for true integration are essential, not optional to satisfy a particular philosophy
- The CMS recommendations are impossible to achieve without a substantial increase in resources, particularly for the DSP’s who are at the heart of the actual services provided: lack of adequate compensation is the most vital issue, not uniformity with restrictive policies on choice for people with disabilities. This also includes family members who carry a huge burden well into advanced old age
- Support coordinators must be allowed to advocate for those they are assisting with services. The current STP does not allow this
- There is no clear and understandable process for “heightened scrutiny” and this allows subjective judgment to be a factor upon which some programs could be allowed
- The STP is filled with rules but there is little mention of accountability or how it encourages expansion of residential facilities
- Behavioral supports are almost impossible to obtain under today’s system of care especially for adults with I/DD living at a parent’s or guardian’s home. Several family members testified to this, yet the STP would encourage such situations like this to profligate, as clinically-centered congregate settings would not be funded
Getting back to density, serious questions were raised, some of them legal:
- Density restrictions may be unconstitutional as they target a specifically-defined population- there are no such rules for other groups such as the elderly or veterans. A national organization has been founded to confront CMS on this issue, with the purpose of establishing that these policies are discriminatory against the I/DD community and favor the wealthy
- Density restrictions pose a danger to proven clinical models that are successfully caring for groups of residents that require enhanced medical and behavioral services. While institutional settings are clearly flawed and demonstrably unnecessary, going to an individual-based system of care exclusively is economically and practically disadvantageous to expansion of community-based living- by ruling out all but a handful of options, people with I/DD and their families must serve rather than be served
- Several parents noted that “mini-institutions” can exist even in small-population group homes and called for an impact analysis of what the STP changes would look like. Some settings are transitional in nature: why can’t options be allowed for this? If the output is sensory integration in a natural setting and increased social opportunities within the community, should this still disallowed due to nonconformance with input (the STP)?
- NJSTP goes far beyond the intention of Olmstead and in this interpretation actually “…destroys the ability to integrate” and achieve a quality of life according to one speaker. “What happened to choice?” asked another whose daughter had been one of the first “Real Life Choices” participants
- The role of guardians is ignored, yet the great majority of intellectually challenged adults are totally or partially under a guardian’s supervision. At a recent conference, when a high level CMS representative was asked about input from guardians, the reply was that there had been none- there is no active advocacy organization nationally that represents guardians in the I/DD community.
DDD was represented by a large segment of staff but the meeting was a listening session only. The Division provided a respectful and pleasant environment for the hearing and interacted extensively with the meeting participants when the event ended. Everyone was given an opportunity to speak.
The NJ I/DD community is fortunate to be represented by a large number of well-informed and highly-motivated advocates. The result and evidence of this activism will be seen as CMS responds to NJSTP’s revisions over the next few months. It was clear that the advocates’ energies will be focused at a higher level if reasonable changes are not realized. This issue will not go away: these advocates live their lives with realities that do not go away. The consequences are far too important.