Testimony of Lisa McCauley Parles, Esq.
New Jersey State Senate
Legislative Oversight Committee
June 10, 2015
Good Morning. Thank you for inviting me to speak about this critical issue. My name is Lisa McCauley Parles. I am a partner in Parles Rekem, a law firm representing individuals with disabilities and their families. I am also the mother of a 24 year old young man with autism and have several concerns regarding the limited options for individuals with challenging behaviors offered under New Jersey’s proposed plan. The revised plan, which is more restrictive than the federal regulations, will serve to limit options for the disabled and in many circumstances could endanger the lives and health of our most vulnerable citizens.
There remains a great deal of confusion about what the revised plan does, and does not, do and what is and is not required under the federal rule. The Plan continues to limit choices. Under the Plan, going forward, DDD will only fund a 4-6 person group home or set-aside units in a development where no more than 25% of the residents are disabled. In addition the plan prohibits settings where the participants’ home and vocational programs are located on the same property. This is known as the ban on co-located programs. While only DDD can only definitively answer the question of what they will require going forward it appears that there will not be funding available for programs that are farmsteads, intentional communities or campus based programs. Why is there so much confusion about what the Plan mandates? One of the reasons is that rather than clearly state the 4-6 bed limit or the 25% density restriction the revised plan pointed to 2 federal programs: the money follows the person and the HUD 811 neither or which dictates states’ plans for adult services.
The initial plan was revised and when it was, there was great relief that people would not have to move from their residential settings. However, it has proven difficult to get answers from DDD on whether existing co-located programs will continue to be funded. It is important to note that a significant percentage of the DD/ID population need campus based programs in order to be safe.
My son, Andrew, currently lives on Bancroft’s Lakeside Campus which provides him with appropriate support and supervision. At Lakeside, the presence of on-site behaviorists is a key component as is the ability to remain productive on days that his behaviors make it impossible to go to a job site in the community. In addition, in a campus setting if a crisis occurs the response time of additional staff is significantly shorter than in a group home. His campus is not an institution and his experience there on many days is much more inclusive than life in a group home. Under the state’s proposed plan it is still unclear and unsettled if this outstanding program that serves 48 individuals with severe and challenging behaviors will be forced to change a successful, clinical model.
On many days Andrew does participate in a number of community based projects such as Meals on Wheels. However, in addition to working on these meaningful projects, Andrew has tragically:
gone 3 days without sleeping;
gone 6 days without eating;
lost 100 pounds in three months; and
suffered a self-inflicted traumatic cataract.
More recently, he detached retinas in both eyes due to self-injury and had to undergo two separate surgeries. Andrew was not successful in a community group home. It also was not an experience that led to more community integration. For all practical purposes, the only interaction the residents had with neighbors was when they complained that the music therapist was too loud. The notion that simply placing individuals in group homes leads to an inclusive experience is a fiction. There are many “Andrews” out there whose needs cannot be met in apartment settings or community group homes. In order to keep individuals with severe and challenging behaviors safe, co-located programs must be permitted. In fact, given the need more must be built.
The federal rule allows for campus settings and settings where individuals live and work in the same location. In a December 3, 2014 letter, CMS Director Barbara Coulter Edwards stated “It is important to note that the regulation does not prohibit site specific settings…” Criteria set by CMS are not based on physical characteristics or density. All regulation and licensing characteristics should be based on outcome oriented criteria and the individual’s experience.
Given the continued confusion about what the federal rule requires, I asked the Coalition for Community Choice to review New Jersey’s plan. Yesterday I received a letter from the Coalition in which its National Coordinator states that the Plan “includes more stringent criteria than the federal regulations require and are based on physical characteristics."
CCC also pointed out that New Jersey has unnecessarily relied on restrictions from two federal programs in crafting its Plan. The Money Follows the Person program which is a federal finance incentive designed to assist people at risk of institutionalization has a 4-6 bed limitation. However, this federal program in no way mandates statewide housing policy. Neither does HUD Section 811 which is also in the Plan.
According to CCC, the bed limitation is not mandated by the federal rules and it may, in fact, be detrimental for states to overly rely upon one type of setting. Moreover, CCC explained that although HUD 811 contains a density limit of 25%, there are many funding sources for affordable housing that do not have this requirement. These restrictions have no place in the plan and serve only to limit choice and stunt future development of the type of programs that are desperately needed in New Jersey.
DHS ignored the revisions requested by stakeholders. Rather than clearly stating the bed limit or density restrictions, in wily fashion, DHS rewrote the plan in a way that kept these discriminatory restrictions and by citing other federal programs caused confusion.
A number of New Jersey residents have filed objections to the STP with CMS based upon the State’s failure to make changes that were requested by the majority of stakeholders. In addition, New Jersey’s citizens have objected to DDD’s misleading reliance on the Money Follow the Person and HUD 811 programs. They also based their objections on the lack of transparency in the process. The initial proposed plan was released by DHS late in the day on January 26, 2015. There were only two public comment sessions each of which was two hours long. Remarkably, the first of two public comment sessions was scheduled for 10:00 a.m. the very next morning! At the second public comment session, testimony was limited to three minutes per person and speakers were cut off, even if they had not finished their statements. Approximately eighty people present wished to testify but the session ended, promptly after two hours, with only 36 having been given the opportunity to have their voices heard. At that point, despite the pleas and protestations of the audience members, DHS officials walked out of the hearing room to the dismay of the stakeholders present. The unnecessary and untoward limitation of public comment was distasteful and disrespectful. Other states provided far more opportunity for public comment and stakeholder involvement.
Throughout the entirety of the process, New Jersey DHS engaged in conduct that was anything but transparent or cooperative. Unlike many other states, New Jersey released its proposed plan at the 11th hour and left little time for constructive evaluation or revision. Many states began the STP process as early as January of 2014 and issued multiple revisions of their plans allowing for review and discussion by stakeholders. Similarly, other states provided far more opportunity for public comment than did New Jersey. For example, Wyoming which is the least populated state in the US and has a total population of 563,000 people which is less than the population of NJ’s Ocean County held 8 public input sessions.
In addition, New Jersey has failed to establish the type of cooperative process that exists in other states where state government, families, providers and persons served have collaborated with a goal of expanding housing options. For example, Florida has awarded almost $50 million in tax credits to invest in the development of accessible and affordable housing mandating that 80% of the units be for individuals with developmental and intellectual disabilities. In Ohio, fourteen members of the state’s congressional delegation including the Speaker of the House recently sent a letter to U.S. Secretary of Health and Human Services in support of farm communities where residents live and work at the same location.
In addition to the right of integration, our disabled citizens also have the right to be adequately supported in programs that meet their actual needs, to be presented with options and most importantly to be safe. To those who say that all campus based programs should be barred, I ask the following: if other citizens may choose among options such as living in an over-55 community, or on a college campus why should the disabled not have the option of living within a campus community that keeps them safe and appropriately meets their needs?
New Jersey’s plan must be rejected.