One of the most perilous times in the lives of young adults on the spectrum is the transition from the stability and structure of school to lives away from their parents’ homes – lives with as much independence as possible. I know this road well because I am the mother of a young man with an autism spectrum disorder. I have often thought that if I knew I would outlive my son, none of this would be necessary and I would be more overly protective and have him remain at home with his family. I’m sure many of you reading this feel the same way. The statistics show that most young adults on the spectrum live at home. However, we must all come to terms with the realities of life and the imperative to help our children mature.
With this in mind, I was excited when my son started New York Institute of Technology’s VIP Program around ten years ago. Upon graduation, this education would provide a steppingstone to the NYIT-GLP (Graduate Living) Program, a program where young adults lived independently with supports in the Hauppauge, NY Long Island area. I, as well as many other families, was counting on GLP to be a successful and long-lasting residential support for our children.
Alas, this was not to be the case. The lessons learned from the failure of GLP to survive lead to the hard-earned success and growth of the POINT (Pursuing Our Independence Together) Program of White Plains, NY.
What were some of the lessons learned from NYIT-GLP? First, it is crucial to determine what the most appropriate entity is to be in charge of an independent living program. Should it be a school (as was the case with NYIT) or some type of parent-run group or not-for-profit or a social service agency (with a willingness and commitment to create a new model for independent living) or something else? Secondly, because many adults on the spectrum do not drive, it is important to place an independent living program in a geographic area with as much easily accessible public transportation as possible. This keeps program costs down and leads to greater independence and greater integration into the community. It is beneficial to have some shopping and recreation within walking distance. The costs of apartment rentals in the area must be considered. The program needs to be of high quality, creative and affordable, with an emphasis on using government funds as much as possible and the knowledge that private funds may be needed to supplement this.
With the aforementioned considerations in mind, our hardy and determined group of a dozen or so families banded together in 2007 to answer these questions. Deciding on locating our proposed program in the urban-suburban city of White Plains, NY seemed an answer to some of our concerns. Deciding on what entity would run this program was a more lengthy process for us. Having been “burned” by the abrupt end of the GLP program, we were reluctant to give up control. We needed an outlet for our creative ideas on how a program should be run. We knew we needed a program which was not a group home but was more supportive and more of a creation of community than renting an apartment somewhere with a Community Habilitation (Comm Hab) paying a weekly visit. For a while, we considered that a parent-controlled entity have responsibility for the program. Then, we decided to meet with various social services agencies in the New York metropolitan area to explain our plight, our concerns, our vision and our time constraints to create a program by the summer of 2008. We had to determine if it would be feasible to partner with an existing social service agency. After an exhaustive search, we felt comfortable that two agencies shared our vision, were flexible, were willing to create a new type of independent living community with supports, and were collaborative enough to allow the parents to have a voice in program concerns. These two think-outside-the-box agencies were even willing to collaborate with each other in the creation and running of the program. With each agency’s special expertise and track record for quality management of programs, our parent group concluded that the Jewish Child Care Association (JCCA) and Westchester Jewish Community Services (WJCS) would manage our proposed community. We certainly were and continue to be grateful to WJCS and JCCA for their willingness to take on this challenge.
And so, in 2007, our parent group started to meet regularly with WJCS and JCCA to help in the creation and planning of a program of excellence. It was serendipitous that our random group of parents had diverse skill sets that proved quite valuable in areas of finance, government benefits, fundraising, real estate, writing, knowledge of resources in the White Plains area, etc. I believe the positive collaboration of agencies and an active parent group helped us all challenge ourselves to move forward. After much planning by the agencies, a POINT Program director was hired as was other personnel. Initial contacts were made with Vocational and Educational Services for Individuals with Disabilities (VESID), which is now Adult Career and Continuing Education Services-Vocational Rehabilitation (ACCES-VR), regarding employment for POINT members. The first monthly social calendar was created. By the summer of 2008, our pioneer group of a dozen or so young adults had rented apartments in a lovely White Plains apartment building near shopping, transportation etc.
The POINT Program of 2008 faced many challenges, especially with respect to obtaining government benefits. Most of our young adults were originally from the New York metropolitan area but a few were from the Hudson Valley and Westchester. So, residency needed to be established. Our parents were paying rent as well as a program fee and other expenses. Even transferring benefits from one county in NYS to another proved challenging. Expediting the job seeking process was a concern as was providing job readiness, career guidance and volunteer opportunities.
WJCS and JCCA and our parents group continued to work to refine POINT and face the start-up challenges. As a result, the POINT Program of 2013 is a well-established residential program that supports almost 40 young adults with developmental and learning difficulties, including ASDs. POINT members now live in a variety of well-chosen apartment buildings within walking distance of each other. Supports are tailored to the needs of each participant. We have an experienced Director, trained program specialists, Comm Hab workers and a service coordinator. There is a full social calendar available to participants each month that reflect their interests and needs. In addition to having created a genuine community, the vocational rate of POINT young adults is more than 50% in paid employment vs. a national rate of 85% unemployment among persons with developmental disabilities. All POINT participants are expected to be actively engaged in employment, education and volunteer activities. With the support of UJA, we have the JCCA-Compass Project assisting our members with internships, vocational readiness and jobs. Our crisis intervention and 24-hour emergency coverage has been tested and has proved to be effective.
POINT is a model creative residential solution that provides effective and efficient individual supports. Yet, as OPWDD embarks on its road to reform, we have not been successful thus far in receiving significant OPWDD support. We hope that as OPWDD continues its reform process, it will more fully embrace the POINT model.
It should be noted that the POINT model has inspired other independent living with support models such as the Queens Independent Living Program (QILP) of Queens, NY. We continue to strive to break new ground in creating strong, supportive affordable community networks that enable participants to lead fulfilling lives.
For anyone interested in finding more about the POINT Program, please contact the director Barbara Greene at bgreene@wjcs.com or by phone at (914) 761 0600 x.175.
