Allison Kleinman, LCSW is the Director of the Center for Special Needs + Adaptations at The Jack and Shirley Silver Center for Special Needs at the Marlene Meyerson JCC Manhattan. In her creation and spearheading of the department, Allison's focus has been on developing individualized paths for all people to connect to community and achieve their potential for independence.
With Allison's permission, I am posting the summary of her Focus Groups that were conducted by the JCC. All of the Center for Special Needs programs are open to the broader community.
In late May 2018, Allison also led a group of JCC families from The Silver Center for Special Needs to Israel for a week long trip to explore and study different housing models and philosophies in hopes of developing new ones here in NYC.
Focus Group Summary and Recommendations
Two focus groups of parents of young adults with Intellectual and/or Developmental Disorder (IDD) and/or Autism Spectrum Disorder (ASD) were organized and led by the JCC’s Center for Special Needs (CSN) staff on April 18th and April 23rd, 2018 at the JCC Manhattan. In total, 18 parents of 16 individuals participated. The age range of the young adults whose parents attended is 16 to 35 with the majority in their early twenties. They all currently live with their parents, mostly in NYC.
The goals of the groups were:
(1) To better understand the social and recreational needs of the families served;
(2) To provide information on existing resources that may address some of these needs; and
(3) To facilitate the formation of connections between the parents.
The central theme present in both focus groups was frustration and concern regarding the two inevitable transitions for each family present:
- The immediate transition from relying on the special education school system to identifying, obtaining and/or creating services and programs for adults with disabilities. Several parents reported that navigating the associated bureaucratic complexities and finding suitable services places a considerable burden on them of time, knowledge and financial resources. Many parents spoke of the scarcity of services suitable for their children’s needs.
- The second principle concern was regarding the availability of support systems in the future when the parents will no longer be able to care for their children.
Recommendations and Potential Directions:
The needs and hopes shared in these two focus groups and in the survey reflect an underlying feeling of loneliness and disconnectedness from society that the young individuals (and sometimes parents) experience, as perceived by their parents, now that they are transitioning into adulthood.
The concern for future support that will assure that their children’s lives continue to be engaging and meaningful now and when parents will no longer be able to oversee it is great and valid and should be given considerable attention in planning sustainable and/or scalable programs and services.
Addressing these needs can be done in a number of ways including:
- Establishment of a forum / task-force / opportunities for professionals and family members to share information and collaborate with each other.
- Development of long-term half/ full day programming focusing on recreational/social and vocational opportunities in a variety of settings.
- Development and training of natural supports within the community, including community habilitation workers, job coaches, peer mentors/social companions, inclusive programming and volunteer opportunities.
Prior to the group sessions, a survey was sent to parents who had contacted the CSN JCC staff regarding programming and opportunities for their children. Twelve out of the 14 survey respondents also participated in the groups. The survey found that only 15% of the respondents were satisfied with their children’s social/ recreational life. The predominant unfulfilled needs were related to social programming and friendship opportunities. More detailed demographics and survey responses are listed below.
Appendix 2 - The needs, hopes and specific areas of interest expressed by the parents include:
Full/half day Post-21 programming where interests and social needs are addressed.
- Structured opportunities for socialization in order to create meaningful and age-appropriate friendships in contained and inclusive settings.
- Structured recreational and social programming suitable for individuals who need a higher level of support, such as individuals with limited verbal communication, behavioral issues or physical disabilities.
- Particular areas of individual interest mentioned: culinary, pottery, fashion, theater groups, social skills, art and culture.
- Programming focused on wellness: healthy habits and choices in nutrition, fitness, etc.
- Vocational training and long-term supported job placement programs.
- Travel-training support to enable participation in activities.
- Becoming part of New York City society through engaging with the many cultural opportunities the city has to offer and developing a sense of belonging, as well as a greater level of independence and confidence in the city environment.
- Inclusive programming involving peer mentors.
- A forum to share and receive updated information regarding services and to advocate for needs.
- Sustainable long-term housing solutions.
- Continued education opportunities in formal and informal settings.
- Promotion of self-advocacy skills.
- Programming developing independent living skills, focusing on Instrumental Activities of Daily Living (IADL) such as managing self-finance, shopping and meal preparation, household maintenance, etc.
- Programming related to sexuality and intimacy.