Transition from school to the adult world is exhilarating for some, terrifying for others. Some families have described it “like falling off a cliff and never knowing when we will hit the bottom or climb back to the precipice.” This time is well-described by the hundreds of families who worry about their 19, 20 and 21 year old adult child who will leave the cocoon of schooling to become part of the rest of the world of “work,” either living at home or in a supported apartment. Transition is a coordinated set of activities in the form of a plan to move from school to the post-secondary world of work, vocational training, college, employment, and adult education, access to adult services, independent living, supported apartment living and community integration. The road to get there is fraught with quicksand, ruts and boulders for families who have children on the autism spectrum. The issue is to clear the road of obstructions to allow these individuals the opportunity to live happily with meaningful lives in a safe and supported environment.
The planning for transition for those with ASD should start at 14 years of age. The process takes into account a teenager’s strengths, challenges, interests, preferences, support from agencies and interagency linkages with parents/guardians as the primary advocates. By 16 years of age, those measurable planning goals should engage the teenager in transition activities of job coaching, self-care with activities of daily living (ADL) such as washing, eating, dressing, shopping, cooking, and generally taking care of oneself and planning ahead by acquiring skills to live, work, and engage in social activities. Most importantly, parents need to ask their adult child, “What do you want? Where do you want to live?” Each young adult with ASD must be involved in the decision-making process. There is a need to look at assessment data from the teenager’s Individualized Education Plan (IEP), observations in job settings, ADL activities, skills needed for adult life and behavioral supports into adulthood. These activities, shared by the school staff, transition staff, and family become the focus of life planning to access resources and services that will enable an adult with ASD to become, if not totally independent, perhaps semi-independent with supervision at a day program or in a housing environment. During this transition process, having an advocate is essential. This means that there needs to be someone to intervene and/or speak for the adult with ASD. This advocate can be a family member, sibling, agency, counselor, and/or the young or adult individual’s own advocacy skills that have been developed.
The planning process must take into account whether or not guardianship has been established at 18 years of age, what financial resources are currently in place to support the young adult as he or she grows older, and what financial supports will be in place once the parents/guardians die. Of additional importance is estate planning (especially establishing a Special Needs Trust), an annual review with all family members, and the existence of a letter of intent for when the parent is no longer there to guide and advocate. It is important see if the individual qualifies for the many federal financial supports available, including Supplemental Social Security Income (SSI) or Supplemental Social Security Disability (SSDI), Medicare, Medicaid, Medicaid Waiver, State Children’s Health Insurance (CHIP) or Children with Special Health Care Needs (CSHCN). One of the most important questions that parents must ask themselves is, “Where will my son or daughter live when I am gone?” All of these components, as a checklist, are important not only for the parents/guardians, but for other family members to know what safeguards and supports are in place, especially for when the parents are no longer around.
As the adult individual may either be low or high functioning, the way in which he or she is presented by the parents or guardian is important; whether to a potential employer, job coaching setting, agency staff or when seeking living accommodations in a group home, supported apartment or independent apartment. In addition to their own view, parents should consider the opinions of school staff, immediate family members, supervisors at the job coaching sites, extended family members and neighbors. We must clearly remember that the adult with ASD will be out in the “real world,” and those who are meeting him or her for the first time will not have the luxury of reports, introductions and/or background information to make “accommodations” on the spot.
The following is a list of action items to ensure the road to transition is as smooth as possible:
- Begin the process of planning at 14 years of age and review that plan every year;
- Begin the guardianship process at least by 16 years of age so that guardianship is in place at 18 years of age;
- Obtain SSI benefits and/or where appropriate SSDI benefits;
- Register with your state’s Developmental Disabilities Agency, read on-line and go to the office for a one-on-one meeting with a counselor;
- Access whatever behavioral, medical and advocacy supports you can while under the school district’s responsibilities;
- Begin your estate planning now, no matter how young or old your child is, so that you can begin to plan for where your son or daughter will live; and where appropriate bring family members into that process;
- At least 12 months to 18 months ahead of the time that your adult child is going to leave the cocoon of the school, call for a meeting with not only the school officials, but also any state agency officials who may be supporting your son or daughter after 21 years;
- As a part of that process, consider a Person-Centered-Planning review at least a year before exiting the school. This consists of what your adult child wants to do for work or for volunteering, where he or she wants to live, who will be a support on a daily basis, what community experiences will support community integration, how your adult child reacts when unhappy, angry, upset, what is considered a good day, a good week, a good weekend. Consider what your adult child likes to do for fun, what are the self-help skills that are still in need of support, what are the social and personal arrangements that work and how do a variety of people “view” the adult with ASD.
- Consider a Vocational Assessment to help to determine a direction, not only while in school but also once the adult child with ASD steps into the post-secondary world;
- Uncover the unexpected skills and talents of your child as early as possible, and build on those through school and subsequently into adulthood;
- Considering the long term goal for your adult/child with ASD, and that of the adult/child to live a safe, happy and meaningful life, whether it is at home, independently in an apartment, in a group home or semi-independently in a supported apartment; and how you can focus on reaching that mile marker.
- Network, network, network with other families; they are your allies and sources of information to unlocking the vast array of information that will help you and your adult child with ASD;
- Consider all the alternatives for living semi-independently or supported within your community or your state and how you can make that happen.
Once the elements are in place, the most difficult and challenging road to navigate is determining where your adult child will live. The living options include: at home with parents and/or another sibling; a group home, which may include people not on the autism spectrum and may be miles from where the immediate family lives; an independent living apartment, which may provide weekly visits from a counselor and/or support staff member; or a very unique setting that is under construction in Warren, NJ. This facility, Mt. Bethel Village, is a supported apartment complex with professional staff and direct care staff 24 hours a day, seven days a week. This professionally staffed complex will offer on-site activities and supports including: art, music, library, exercise classes, a computer room, video-game room, social groups, transportation, behavioral intervention support, medical oversight for medications, and transportation to outside jobs and recreational experiences.
The first of its kind on the east coast, Mt. Bethel Village is an alternative to traditional housing for adults on the autism spectrum and will open in October 2012. Many of its design features are based on recommendations made in the 2009 report Opening Doors by The Urban Land Institute (ULI), the Southwest Autism Research & Resource Center (SARRC) and the Arizona Board of Regents for and on behalf of Arizona State University. Under the direction of highly trained staff, adults will be grouped in neighborhoods based on their unique needs, age, and their cognitive capabilities.
Families will need to consider what the best residential option will be, as their adult child is expected to live way beyond the years of the parents. In conclusion, the road to adulthood will take many twists and turns, will be bumpy and confusing, but it is a road that must be traveled. By planning early, the individual’s future will be secure and supported as they age into adulthood.
For more information about Mt. Bethel Village, visit http://www.mtbethelvillage.com/.