One Size Does Not Fit All: Our family’s journey to find a suitable adult life for our daughter involved very specific steps from identifying need at an early age with the Department of Developmental Services, fulfilling eligibility requirements for SSI and Medicaid at eighteen, guardianship, and getting our DDS case manager actively involved in finding an appropriate apartment mate. Our final step was signing on with Ability Beyond Disability as our service agency and locating an apartment. Now we are building in the programming and staffing with ABD and outfitting the ladies’ future home. Whew!
Relief: I am beginning to feel some relief. The big one was closing on the apartment. And yesterday’s meeting with members of the ABD team took away the unsettling vagueness of weekly programming. We completed the medical check-up, the necessary TB test and this pertussis whooping cough/tetanus deal (that was a “whopper” and left our daughter a bit uncomfortable for several days). The Pegasus evaluation is behind us and she will be in the summer class on Saturdays, relief. Are there more hurdles? Always. But “we’re good.”
A Crude Template: This blog is for others, as a bit of a template to follow for their maturing special needs child. Arguably a rather crude template at that. We reside in Connecticut and states differ in what they offer special needs adults and children, and families differ greatly in what they want. Some don’t meet the requirements of their state’s equivalent of DDS, though they may be eligible for the federal programs of SSI and Medicaid. Other families eschew dependency on government entitlements. The finding and funding for supported residential housing can be the most daunting challenge of all. Our daughter was lucky because by being schooled in Massachusetts for five years and boarding there, she was considered a priority by Connecticut’s Department of Developmental Services for a residential subsidy when she “aged-out of the system.” This was a surprise to us. We had no clue that sending her to boarding school out-of-state (i.e. living outside her parental home) would enhance her chances for housing upon her return to the state. Throughout her five years on Cape Cod, she was considered legally domiciled in Connecticut.
Supported Independent Living: Many families are appropriately cautious about placing their adult special needs child in the hands of others, and choose to keep them at home while they receive day services. Everyone has to create the customized package that works for their adult child and his or her family. Listed below is a sampling of adult programs that several of our daughter’s classmates will be attending. I apologize for the geographic limitations of the listing:
Palaemon, Inc. is located in Barnstable, MA on Cape Cod. It “provides young adults with substantial learning disabilities housing, food and educational services to prepare them for autonomous living.” This assisted living program provides “independence with a safety net.” Residents have the opportunity to attend Cape Cod Community College and participate in community activities. (No website, but here’s the phone number: 508 775 3551)
Giant Step Services, LLC is located in Hauppauge, NY, which is located on Long Island. Their “3-Step” programming offers assisted independent living with educational/classroom, work training/employment opportunity and counseling/social skills classes. Residents have the opportunity to attend Suffolk Community College. (No website, but here’s the phone number: 631-630-5547 or 631-630-5550)
LIFE: Living Independently Forever, Inc. is a supported independent living program with campuses in Mashpee and Hyannis on Cape Cod, MA. It offers supports to assist residents in attaining their maximum level of independence in a group home setting or condominium community. Residents have the opportunity to attend Cape Cod Community College and participate in community activities.
The R.E.A.C.H (Realizing Educational and Career Hopes) Program at the College of Charleston (S.C.) is a four-year inclusive non-degree seeking program for students with mild to moderate intellectual disabilities. The purpose of the program is to provide the opportunity for all students to realize their intellectual and personal potential, and to become responsible, productive members of society. REACH students will participate in the academic, residential, social, and cultural experiences offered by the College, with appropriate support for success.
New Hampshire Technical Institute: Concord’s Community College is a fully accredited Community College in Concord, NH, offering Associate Degrees and certificates in 62 programs. It offers its students a full-campus experience including a wide range of student services; student clubs and organizations, cultural and social events, opportunities for community service and service learning, student counseling, health services. Students have the option of living in their on-campus residence halls.
Halyard Services is an independent living program which focuses on the individualized needs of their clients to offer the right balance of support and independence. Clients live in community-based residences owned/rented by the client with approximately 10 hours per week of agent assistance. Residents have the opportunity to attend Cape Cod Community College and participate in a range of community activities.
Independence Farm is a supportive living program currently located in Barnstable, MA on Cape Cod. They provide a safe, structured, caring and creative home environment. They also foster a community-based accountability model which encourages teamwork and building relationship techniques. Residents have the opportunity to attend Project Forward at Cape Cod Community College and integrate into other community events. They will be located about one mile from Riverview beginning July 1st.
Jespy House, Inc. is located in South Orange, New Jersey. It provides supportive living and offers a life skills program, housing options, job training and employment opportunities, social training and employment opportunities, counseling, and health services. JESPY clients may immediately begin to live independently in the JESPY community, or they may first become part of the Residential Living Program where they will learn the skills to achieve independence.
The Threshold Program at Lesley University is a comprehensive, campus-based program at Lesley University in Boston’s Cambridge, MA area, for highly motivated young adults with diverse learning challenges. The program offers classroom and hands-on practical experience toward the goal of independent living including development of independent living skills, vocational training, social skills and electives in the arts and fitness.
Other programs known to me are: Vista in Westbrook, CT, Chapel Haven in New Haven, CT and in Tucson, Arizona; Casa de Amma in San Juan Capistrano, California. State funding options depend on whether these programs are considered “vendors” by your state’s equivalent of the Department of Developmental Services or other funding bodies. You can also look into the option of a “self-vendor” designation which one former Riverview family fought for and won in their region in California, which enabled their child to live in an optimal setting for her needs and proximity to family. Or you can fund out of your pocket or through a trust or other program with some combination of personal monies, SSI and Medicaid.
No Quick Fixes But Mucho Options: Good Luck To All Of Us.
©Jill Edelman, M.S.W., L.C.S.W. 2011
Thank you so much for this information, Jill. We are just starting the process of exploring housing options for the future for our 24-year-old daughter with Down Syndrome. It’s incredibly helpful to connect with another parent who has successfully negotiated this process.
Mary Bellamy
Dear Mary,
Thank you for letting me know how much you have appreciated the post. The goal of these postings is to help others and your words mean a lot to me. Good luck in your journey.