Testimony of Lisa McCauley Parles, Esq.
Regarding DDD’s Statewide Transition Plan
New Jersey State Assembly
Human Services Committee
February 12, 2015
Good Morning. I would like to thank the Committee 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 State Transition Plan.
New Jersey’s proposed State Transition Plan limits choices for people with developmental disabilities. Under New Jersey’s plan, in order for a residential setting to be funded with Community Care Waiver (“CCW”) funds, it must be either a 4-6 bedroom group home or set-aside units in a development where no more than 25% of the residents are disabled. It also requires that for vocational, or day, program participants to receive waiver funding, the participants must spend at least 75% of their time in the community, not at the day program site. All three of these rules – bed size limitations, density percentages, day program restrictions - are not required by the federal CMS regulations. Under the proposed plan, New Jersey will no longer allow programs to receive state and federal dollars under the CCW in settings where the participants’ home and vocational program are located on the same property. As a result, families with loved ones who are developmentally disabled were at first confused. They are now angry and terrified. New Jersey’s proposed policies, if implemented, could result in the closure of many existing vocational and residential programs and are unnecessary, unreasonable impediments to the development of future projects.
I would like to state, however, that the state’s plan to make available state funds for non-disability specific settings is an interesting development although I believe that limiting the disabled population to 25% is discriminatory. If we were to say that no more than 25% of a community can be comprised of African Americans, or women, or Jews we all would recognize that anti-discrimination laws have been violated. I have heard of residential projects that have units for both low income seniors and the developmentally disabled. My son, Andrew, has worked in a number of vocational projects assisting seniors such as Meals on Wheels and a shopping program for home based seniors. However, in addition to working on projects for seniors, Andrew has tragically:
gone 3 days without sleeping;
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 requires intensive staffing and supervision and 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 the neighbors 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.
Andrew currently lives on Bancroft’s Lakeside Campus at Mullica Hill in Gloucester County. The program provides him with appropriate support and supervision. At Lakeside, the presence of on-site behaviorists are 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 this outstanding program that serves 48 individuals with severe and challenging behaviors is at risk to close since more than 25% of its population is disabled and the program is located on a campus setting.
In a program with set-aside units where no more than 25% of the residents may be disabled, I fear that other tenants separated by just a wall would not tolerate his loud and challenging behaviors. I understand and recognize the other tenants’ rights to a good night’s sleep. Unfortunately when in “close” quarters with other members of the community such as in a hotel our family has had the police arrive and ask us to quiet him down, a task that often is literally impossible. There are many “Andrews” out there whose needs cannot be met in apartment settings or community group homes.
The CMS final regulations governing HCBS settings allow 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…” Under the final rule, campus based communities are not prohibited. Criteria set by CMS are not based on physical characteristics or density of persons with disabilities. All regulation and licensing characteristics should be based on outcome oriented criteria. New Jersey’s proposed plan, which is more restrictive than the federal regulations, will serve to limit options for the disabled and in many circumstances could endanger the life and health of New Jersey’s developmentally disabled.
One of my clients, a 9/11 widow has twins, one of whom has autism. Like many individuals with autism, in his teen years he required a residential placement. He went to a farm community in Pennsylvania and is now thriving. After 9/11 my client’s son would put a photograph of his father on the floor and stand on it, saying “I want to get in with daddy.” He looked out the window of his house each night for months waiting for his daddy to come home. As a result, this 9/11 widow had to move her family to a new home. She had hoped that she and other families would be able to work together to develop a farmstead community for disabled adults in New Jersey so her son could return home when he became an adult. This 9/11 widow was forced to move, once by the terrorists. If she is forced to move to a state such as Ohio in order to find a program that meets her son’s needs, it will be a second tragedy.
I urge New Jersey to work towards the goal of giving recipients of waiver services choices from among a spectrum of settings. This was the intent of CMS’s final rule. New Jersey should not be more restrictive than the federal final rule or other states.
The Coalition for Community Choice (“CCC”) a national alliance of organizations, businesses and housing professionals addressing options for individuals with developmental and intellectual disabilities has reviewed over twenty State Transition Plans for its membership. CCC has stated that New Jersey’s plan is the most restrictive that they have reviewed and is far more restrictive than the final federal rule mandates. In other states, through a cooperative process, state governmental agencies, families, providers and persons served have collaborated with a goal of expanding housing options for the developmentally and intellectually disabled. 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 Sylvia Mathews Burwell, the United States Secretary of Health and Human Services in support of farm communities in their state including farmsteads where all of the residents are disabled and 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 my disabled child not have the option to live within a campus community where he is happy and safe?