Creating Community for Adults with Developmental and Intellectual Disabilities

Navigating the road to adulthood is rocky for many people. But for young adults on the autism spectrum, the challenge is particularly tough. Social isolation can pose a significant challenge for these adults in their post-secondary school years, even when compared to young adults who had received special education services in school for intellectual disabilities, learning disabilities, and emotional disturbances. Research published in 2013 (Orsmond, G.I., Shattuck, P.T., Cooper, B.P. et al, 2013) showed that 47.2% of young adults with ASD never received phone calls from friends and 48.1% never got invited to activities, percentages that were significantly higher than for young adults in the other groups. According to a study published in 2018 (Rai D, Heuvelman H, Dalman C, et al.), by age 27, 19.8% of individuals diagnosed with ASD had a diagnosis of depression compared to 6% of the general population.

This year, POINT participants, pictured here in front of the Country Music Hall of Fame, took their annual group trip to Nashville, Tennessee

This year, POINT participants, pictured here in front of the Country Music Hall of Fame, took their annual group trip to Nashville, Tennessee

The challenges faced by individuals on the autism spectrum don’t end after they come of age. They continue to need support to help them socialize, gain vocational skills, find and keep jobs, and do everyday tasks like housekeeping, food shopping, cooking, and handling money.

In 2008, fifteen families approached Westchester Jewish Community Services (WJCS), a large non-profit human services organization in Westchester County, New York, seeking an agency who could provide support to their young adult children who were not appropriate candidates for living in community residences, but still needed support to be able to live independently. That was the start of POINT (Pursuing Our Independence Together), a unique community that WJCS offers in partnership with JCCA, a non-profit organization in Manhattan. The goal of the community is to increase the members’ skills so they can live independently, provide vocational training and support for competitive employment, and create social opportunities. Today there are 57 members of POINT, ages 21 to 50, who have come from all over the United States, including California, Virginia, Florida, and New Hampshire, to participate in our community

Participants in the POINT community find and live in their own apartments in downtown White Plains, NY, or with a roommate if they choose. They live within walking distance of each other and POINT’s community center. There is no staff on premises and people come and go as they please. Our experience indicates that there are no other communities like POINT in the country. Members participate in life skills, pre-vocational training and enjoy activities that fill an extensive social calendar, led by staff. With guidance from the POINT staff, our participants are helped to make good decisions, able to date, explore who they are, and, most importantly, reach their potential in independent living and competitive employment.

Research shows that post-secondary level employment opportunities for individuals with ASD are typically limited (Hendricks and Wehman, 2009), and among adults with disabilities, some of the lowest employment rates are reported for individuals on the autism spectrum (Burke et al., 2010). POINT provides people with a weekly vocational support group; a 15-week curriculum on developing the soft skills necessary for finding and maintaining competitive employment.

It’s common for people with Autism Spectrum Disorder to experience high levels of anxiety and depression. These factors may be related to some of the challenges seen among those with ASD, including social difficulties. Hillier et al (2011) examined whether a social and vocational skills intervention program for adolescents and young adults on the autism spectrum would have a bigger impact that partially alleviated these psychological factors. Following the intervention program, participants reported experiencing significantly lower depression and anxiety.

There is a full social calendar available to POINT participants each month that reflect their interests and needs. Recreational activities include going bowling, seeing movies, going out to restaurants, and gardening. Opportunities to socialize and celebrate holidays and milestones together are vital to the spirit and connection that POINT participants feel. They enjoy celebrations for Memorial Day, Halloween, Chanukah, Thanksgiving, and any other reason we can come up with!

POINT, which is administered through a collaboration of WJCS and JCCA, is supported by POINT Family and Friends (PFF), a parent advocacy group that is a vital ally in providing fundraising dollars to enhance our ability to offer exceptional opportunities to the community. Through the generosity of PFF we are able to offer special lessons in cooking, technology, art, health and wellness classes, and more, all led by professionals. Support from PFF has also enabled us to enjoy group trips to a variety of destinations, including Nashville, TN; Williamsburg, VA; Philadelphia; Washington, DC; and Niagara Falls.

POINT employs 20 Community Habilitation Trainers to help members learn activities of daily living. The level of support provided depends on the member’s need. At the highest level of support, a participant receives 10 hours per week of one-on-one training with a Community Habilitation Trainer. The focus on their work together includes: shopping, laundry, cleaning, cooking and other life and financial skills. Each POINT participant also works with a Program Specialist (either a social worker or mental health counselor) who provides oversight and guidance in order to promote independence and active participation in daily living within the home and community. Program Specialists also provide crisis management and 24 hour/7 day emergency coverage.

POINT’s pre-vocational services include group and individual internships as well as a Job Support Group with a 15-week JOBBS Curriculum that teaches the soft skills necessary for successful employment. 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.

The sense of community between POINT participants was on full display during an early season snowstorm last year when our scheduled social activity was cancelled at the last minute. Rather than return to their apartments, POINT participants bundled themselves up and traipsed through the snow, wind, and cold to find a restaurant so they could enjoy dinner together. What could have been a disaster turned into a terrific opportunity for an impromptu outing with friends and an adventure in the snow; just like any other group of young adults would do in those circumstances.

For typical 20- and 30-year-olds, making friends, building relationships, finding a job, and participating in social and cultural activities is what they do. Yes, it takes effort to plan a post-college life, but the opportunities are all around. POINT is a unique community for people with developmental and intellectual disabilities who want to live the same life as their siblings and friends.

Barbara Greene, MPH, is Director of the WJCS POINT Program. If you know of someone in the New York metropolitan area who might benefit from POINT, please contact me at bgreene@wjcs.com or call (914) 761-0600 ext. 175. Learn more at wjcs.com.

References

Burke, R. V., Andersen, M. N., Bowen, S. L., Howard, M. R., & Allen, K. D. (2010). Evaluation of two instruction methods to increase employment options for young adults with autism spectrum disorders. Research in Developmental Disabilities, 31, 1223–1233.

Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: review and recommendations. Focus on Autism & Other Developmental Disabilities, 24, 77–88.

Hillier, A.J., Fish, T., & Beversorf, D.Q. Social and Vocational Skills Training Reduces Self-reported Anxiety and Depression Among Young Adults on the Autism Spectrum. June 2011, Volume 23, Issue 3, pp 267–276

Orsmond, G.I., Shattuck, P.T., Cooper, B.P. et al. (2013) Social Participation Among Young Adults with an Autism Spectrum Disorder Journal of Autism and Developmental Disorders 43: 2710-2719

Rai D, Heuvelman H, Dalman C, et al. (2018) Association between autism spectrum disorders with or without intellectual disability and depression in young adulthood [published online August 31, 2018]. JAMA Network Open. doi:10.1001/jamanetworkopen.2018.1465

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