By Jessica Talarick
A child blowing out the candles on his 16th birthday cake is a celebrated occasion in this country. But for parents of autistic children, that moment marks a turning point, often a stressful one.
Once an autistic adult ages out of the school system it is up to the parents to determine the next step for their child. Parents can begin working on New Jersey Department of Human Service’s Community Care Waiver before the child ages out, though.
Many begin that process prior to an autistic child’s 16th birthday, says Thomas McCool, president and chief executive officer of Eden Autism Services.
Medicaid’s CCW provides funding for individuals with developmental disabilities. The funding is administered by DHS’ Division of Developmental Disabilities and is determined by a need assessment. Autistic individuals are eligible for Medicaid without enrolling in CCW, however they receive a smaller amount.
Hamilton resident Bob Titus, whose autistic son Joseph is now 30-years old, said planning for Joseph’s future was a long, stressful and expensive process. Along with filing a CCW, he and his wife hired a lawyer for estate planning to ensure none of their assets were in their son name, which would prevent Joseph from receiving funding. They also researched which of the many group homes were right for their son.
Joseph turned 21 and was put on a wait list for CCW. Titus said his best option was to keep his son at home rather than pay out of pocket for a residential group home. Costs for individuals are around $11,000 a year.
Titus hired a job coach to shuttle his son to a day program at Princeton Child Development Institute. The program was from 9 a.m. to 2 p.m. and the coach would stay with Joseph until Titus returned home from work.
Titus said by not being fully immersed in a group home, his son’s behavior regressed, and he gained weight. Titus also went through his inheritance trying to fund his son’s day program with little assistance from Medicaid.
Joseph spent seven years on the CCW waiting list before he was declared a health emergency. The change gave him quicker access to the state funding. With the funds, Titus was able to enroll him at a full-time program at an Eden Autism group home in Hamilton.
Titus, who now works for a Hamilton-based organization called Autism New Jersey, said Eden provided the structure and education Joseph needed. At the group home, autistic adults continue learning behavioral, social and vocational skills they learned before aging out of school. One of the benefits of living at a group home is having more experience with other people, something Titus could not provide when Joseph was living at home.
Managing social deficits is one of the most challenging parts of autism, Titus said. The educators at Eden teach autistic adults how to be patient and behave when they travel together in public.
Additionally, Eden’s program’s focus on how to live independently. Titus said Joseph learns self-care skills like vacuuming and basic hygiene. Eden also puts a high importance in joining the work force.
Eden’s managing director of adult services, Jamie Douglas, said a typical day for individuals in the residential program involves waking up, making themselves breakfast and preparing to go to work.
Staff trained in applied behavior analysis teach residents and day-program participants skills for work and daily life by breaking them down into individual steps. Douglas said learning these skills takes hours of practice.
Eden provides many different work environments for their participants to engage in. Some go out into the community and work at Wawa cleaning and stocking shelves, while others stay at the home’s work center and do contractor work like stuffing envelopes. The home is also a developing a jewelry-making program, which they sell online and at a boutique in Princeton.
Residents return home at 3 p.m. and are expected to participate in activities with each other.
“What makes us different is the level of engagement we expect, we want them to be very active,” Douglas said. Residents relax after work by going to the movies, mall or a weekly bowling outing.
Douglas said what makes Eden special is the support autistic adults receive, the group home is staffed on a two to one basis. While individuals live independently, they are also surrounded by Eden’s staff, who even accompany them to work.
For all the progress Joseph had made at Eden, Titus said the best thing about the group home is knowing his son is in good hands.
“The greatest thing [about Eden] is the peace of mind knowing that things will be right rather than wrong,” Titus said.