One of the favorite things in my role as Director of Admissions and Family Services at Melmark is talking with parents about their children and helping families maneuver the complicated web of supports available to them. One of the most challenging parts, however, is helping families understand how dramatically different services and supports are in the post-21 world. Many parents just don’t realize what they will face when their loved one graduates from a school program. To help alleviate some of this stress, Melmark has developed a systematic way of assisting families in addressing the various tasks necessary for a smooth transition into the adult system.
We have defined the key ages in transition related services to be 14, 16, 18, and 20. At each of these critical benchmarks, we have laid out specific tasks that families can complete, with the help of the school and county support personnel. Transition goals are reviewed at the student’s annual IEP; goals such as obtaining a state ID, determining who will serve as guardian for the individual with special needs, obtaining Supplemental Security Income, and working with an attorney to set up a special needs trust. Melmark meets with families to help guide them through these processes to ensure a successful transition.
Despite our team’s guidance and all the supports focused on the post-21 transition, this particular change comes with the greatest amount of angst. While parents watch their typically developing children meet major milestones, such as getting their driver’s license, graduating and moving off to college, they are reminded daily that their child with special needs may never reach these milestones. The reality that their child may need lifelong care is becoming evident in ways many parents never could have imagined, and this coincides with the loss of major services and supports previously provided through an IEP. While services to children meeting special education eligibility standards are an entitlement through the Individuals with Disability Act (IDEA) via an IEP, services to adults with developmental disabilities are not guaranteed. Service levels and availability vary greatly, depending on the specific need of the individual, the state or county the person resides in, and the family’s ability to advocate. There is a significant gap in what is needed and what is accessible to families.
The services that are available to support adults with autism have not evolved at the same rate as those for children. There is no unified system of funding that has taken responsibility for these young adults. Complicating an already difficult profile, many of these individuals may have higher cognitive abilities that leave them unqualified for services.
So what is a family to do when, regardless of how well prepared a child is in school for this transition, the opportunities for support do not meet their needs? The good news is that there are many innovative programs and supports being developed to address the issues raised thus far. Melmark directly answered the call for services for individuals who continue to need a high level of support specific to challenging behaviors and intellectual disabilities. The Chris Maurer Vocational Program prepares young men and women for work environments, both on Melmark’s campus and in the community, in a multitude of settings. Whether it’s filing, copying or collating in the clerical room or working in the delivery and packaging areas, individuals who may require more intensive behavioral supports can still develop skills that can eventually lead to possible paid employment. The program, which involves intense behavioral supports within an evidence-based treatment model, has seen success with supporting individuals in food markets, office settings and delivery positions.
Other agencies are focusing on supporting the social and vocational needs of those who are higher on the spectrum in a myriad of ways. Many are utilizing technology as a way to prepare young adults diagnosed with autism for those social situations that may be more difficult to navigate. Still, other programs are creating apartments and alternative living situations for individuals who do not fit within the system as it currently operates. The ALAW (Autism Living and Working, Inc.) program has worked with families on alternative ways of supporting individuals in the community and to help support their growth and continued integration into the natural communities in which they live and work. It is creative thinking like this that will continue to drive the development of services and supports to adequately meet the needs of the most vulnerable individuals.
It is important for parents to advocate for their children early and often. During the IEP process during their child’s school age years, families can begin to identify vocational skills, likes and dislikes. If this process is started early enough, by the time the child graduates, parents will have a good understanding of what vocational opportunities might be best for their child as they become young adults. Additionally, while many families have insisted on intensive staffing for students while in school, it is in their best interest to consider fading that level of support, because staffing ratios in adult programs are typically not as rich as those in school programs. Overdependence on staff prompting and direction can be a detriment to building student independence and can impede the search for appropriate adult settings. Families should also connect with other families who are looking into similar supports and services. Developing a parent network organization can help divide the workload of researching available supports.
In the end, the most important decision will be a very private one, specific to each family and each son, daughter, sister or brother. For some, this may include residential placement in a group home. For others, it may mean independent living in the community with natural supports. In a system where there is too little support and resources to go around, families must focus on keeping an open mind, supporting each other, and continuously advocating for the most appropriate services.