Dear Ms. Lutz:
“Do no harm.”
The fundamental tenet underlining ethical health care delivery bears tremendous relevance to the newly proposed rules regarding funding for residential and vocational settings for persons with developmental disabilities (DDs) in New Jersey.
It is great to see that the State of New Jersey’s Department of Human Services Division of Developmental Disabilities has taken preliminary steps toward meeting Medicaid’s Home and Community Based Services (HCBS) requirements. Community integration is the emphasis of the new plan, and is a critical part of promoting the dignity and enhancing the quality of life for people with DDs, such as autism. Diagnosed individuals without problem behaviors, who have the ability to perform activities, such as those related to self-care and employment, will benefit from the opportunity to build their skills with support and supervision.
Members of the public have been invited to submit their recommendations and concerns to the state, and their voices should be considered with great care, for the delicate lives of our most vulnerable citizens are at stake. As you have noted in your article, significant concerns have escalated to the point that many legislators are recognizing the need for additional time to gather information.
It is critically important to recognize that all developmental disabilities, including autism, exist on a wide continuum of severity, and unfortunately, individuals with more severe impairments and behavioral challenges have a strong likelihood of falling through the cracks of this new plan.
New Jersey’s HCBS “transition plan” would place a maximum of four individuals in a group home, or up to six under special circumstances. The plan seems to encourage individuals to lease their own apartments, but only in complexes where no more than 25% of the residents have DDs. Thank you for pointing out that no such living restrictions exist for people without DDs. If the plan is approved, it would prohibit the use of Medicaid funds to pay for recreational, vocational, and job training programs unless the individual receiving funding spends at least 75% of their day engaged in activities outside of a facility for individuals with disabilities. As you mentioned, this can be a scheduling nightmare that serves no purpose other than meeting a seemingly arbitrary requirement. In addition, New Jersey would no longer subsidize housing affiliated with facilities providing vocational assistance, farms, or campuses.
These restrictions create a gap where individuals must decide between funding and pursuing additional behavioral, vocational, and social support. Many individuals with DDs are capable of working in settings that provide supportive assistance, but the amount of time and intensity of work varies from one person to another. While it is certainly a wonderful goal for all people with DDs to live independently and work a full-time job, unfortunately this is not realistic. Instead, we should establish public policies that facilitate providing ongoing support and teaching skills to maximize independence, at whatever level that may be for each and every individual, rather than endorsing blanket mandates that fail to consider the most severely impacted.
We share your hope that the democratic process will prevail, and that Governor Christie, members of the New Jersey State Assembly and Department of Human Services Division of Developmental Disabilities take the time to fully hear the concerns of the community and critically assess the consequences of the proposed plan. As you point out, New Jersey has an opportunity to be a role model for how states can comply with Medicare’s new regulations while promoting the dignity and rights of residents with DDs.
Again, we ask, do no harm.
Alice Walkup, MS, BCBA and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
Hoboken, New Jersey
