Thirtieth Anniversary Issue on Progress and Priorities in Direct Support

Our son Craig is now 37 and has Down syndrome. For the past 12 years, Craig has lived semi-independently in Amherst, New York, with five other young men with Down syndrome. The agency we have been working with—Aspire of West New York—purchased the house through what was called reinvestment funding from New York State. Craig and his housemates pay rent through their Social Security income and other expenses through their self-directed budgets with the New York State Office for People with Developmental Disabilities (OPWDD). This includes paying for staff called Facilitators of Life Choices (another title for direct support professionals) and two life coaches. Craig and his housemates also pay for food, clothing, and other living expenses. In addition, over the past five years, Craig’s housemates’ parents and us take turns monitoring cameras in the common areas and outside overnight when staff aren’t at the house.

David and Craig talking things over.

Over the years, the young men have shown greater responsibilities and independent living skills. For example, they get themselves up, get ready for their day at work or program, and make themselves breakfast and/or lunch. Staff are responsible for making dinner with the help of an assigned “kitchen man.” This means that one of the housemates works with staff to prepare dinner and clean up afterwards. All house chores are rotated weekly. However, each housemate is responsible for his own room, bathroom, and laundry (with reminders from staff).

It has been heartening to see the joy, growth, and quality of life that Craig and his housemates enjoy, with the support of direct support professionals (DSPs). DSPs get Craig out for shopping, recreation, Catalyst Fitness for personal training, skating with SABAH (Skating Athletes Brave At Heart), and much more. We are so grateful for the DSPs we hired and for the role they play in Craig’s life. All that he’s accomplished in this housing situation started when Craig and his “honorary brother” David, one of his housemates, said in their early 20s that they wanted to move out together to find their “Dream House.” That was back in 2008 after experiencing their siblings leaving home.

Our family, David’s family, and five other families came together. We hired Aspire of West New York to look at a variety of living opportunities using self-directed services. Aspire helped us figure out options for housing and staff that would work for our sons. Living in a “certified group home” was not an option for various reasons; there was a long list of requirements that could take years and they probably could not live together. After searching for more than four years, we finally settled on the right place: a house where each man had his own room and bathroom. The house is located in an upscale suburban residential street. It difficult for us as we live 20 miles away. But we all agreed this was the best house for our sons. It was difficult to convince OPWDD that it was the guys’ choice to live together and not the agency’s choice. When we finally got approval, we began hiring staff. Aspire served as Fiscal Intermediary. This means that Aspire manages the state funds that pay DSP wages and benefits, but we as families work with Craig and his housemates to hire and train staff.

Initially, we hired staff around the clock – during the day and night. We were concerned about Craig and his housemates having overnight support. We looked to hire caring, competent DSPs while only providing close to minimum wage. We then hired a life coach to serve as a lead and schedule the DSPs. Well, we lucked out and started with eager and compassionate staff! Aspire handled finances along with a support broker, who helped manage self-directed waiver services. The life coach provided supervision for DSPs in conjunction with us and the other families. We all held our breath at the beginning and didn’t know what to expect. Our families are the backup support when we don’t have DSPs to cover. That has been a challenge though we have made it work. Now with the help of remote support technology, they have more limited staff support at night so we can focus on staffing during the days.

After 12 years, the living situation worked for all but one of the seven original housemates. He needed more structure. The rest is history, as they say. All housemates except one is working, all participate in day programs, with paratransit coming right to the house for transportation. The housemates have enjoyed living together over the years. Craig’s room is right next to David’s room. They do many activities together. They enjoy a real friendship and have other friends to enjoy life with. Each of the six housemates have different interests and most can be accommodated so they can participate actively in them. For example, Craig loves music and has his drums downstairs at their house. He listens to music and plays it, keeping in mind that he lives with five other people.

Over the years, the DSPs have been there to mentor the housemates, support their independent living skills, and ensure a person-centered culture. Our families and Aspire appreciate and value the DSPs for the many roles they play in supporting all the housemates. We have been blessed with caring, compassionate, and competent staff. As parents, we are concerned about the sustainability of this situation in the future as we now see Craig frequently. He loves coming home to our home but enjoys going back to his other home with his friends. We are mobile now and can support him living so far away. We hope our advocacy will help provide the supports Craig and his housemates will need as they and we age. As parents, it is satisfying to have helped create a “Dream Home” for Craig and David, and support all their friendships and their quality of life. We are thankful for the wonderful staff who have provided support and mentorship over the years.