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Chapter 6, Beyond School
While the school years are regulated by IDEA, and students and families have significant rights and entitlements, the landscape changes dramatically once a student graduates. There is no federal mandate governing adults with autism, and matters are complicated by procedures for determining eligibility that vary greatly across the different agencies. Moreover, funding and eligibility determinations begin at the state level and then flow down through each level of government, so supports and services vary greatly from state to state and locale to locale. Additionally, there is little predictability from year to year as budgets determined by current administrations and priorities of the voters change according to the many other needs of each county. This post-school scenario accentuates the need for parents and IEP teams to b e very strategic in planning during the school years.
Locating Supports and Services in Your Community
Supports and services beyond school for people with autism spectrum disorders are in the formative years. Some of the supports that may be available to your adult child include:
Other supports may be available through county offices of Mental Health/ Mental Retardation (MH/MR) or the Office of Developmental Disabilities (names for these agencies vary from community to community). Services available from the MH/MR/ODD office may include:
- Natural supports
-Relatives and friends
-Financial and legal advisors
- Community supports
-Job training services
-Adult education services
Funding for such services often comes from federal, state, and local governments. Services vary by state; but often each state has services related to the following categories:
- locating services to assist adults with disabilities in the home (with daily care, housekeeping, budgeting, shopping, etc.)
- helping adults to find and retain employment,
- assisting with locating groups or organized leisure activities, or
- helping individuals find a place to live.
Unfortunately, once your child leaves high school, you will no longer have a service coordinator, case manager, or other professional whose job is to help you locate and coordinate the resources and supports your child needs. Instead, you will likely need to function as your child’s case manager, seeking out the services that she needs, figuring out sources of funding, determining how to fill in gaps in services, etc. Some of best ways to get an overview of the adult services available in your community are:
- Mental retardation/developmental disabilities
- Mental health
- Vocational rehabilitation
- Health and human services
1. Networking with other parents in your community;
2. Contacting local organizations to find out about opportunities in your community;
3. Contacting national organizations to find out about federal programs that your child may benefit from.
Other Parents: Often other parents whose adult children are a few years older than yours can be the best source of practical information about finding and accessing services in your community. If your child has not graduated from high school yet, make an effort to meet other parents of students with disabilities at PTA meetings, back-to-school nights, or school-sponsored functions. Ask your child’s teachers if they can connect you with a few parents whose challenges are similar to your child’s (if they are not allowed to give you the contact information for other parents, ask if they will forward an email or note from you to them.)
If your child has already left high school, there are many ways to find parents of other young adults within your community. Search the internet for list serves and bulletin boards for families of children with ASD. For example, if you go to the home page for Yahoo! Groups (www.yahoogroups.com) and type in “autism” and the name of your state in the search box, you will likely be able to locate at least a couple of support groups in your general area. There may also be support groups for parents of children with ASD or developmental disabilities in your community that have meetings you could attend. Local and online support groups are forming every day in order to focus on post-graduation. Such resources should be tapped to brainstorm ideas and to benefit from the experiences of others who may have encountered similar experiences.
Local Organizations: If there is a county chapter of the ARC, United Disability Services, Easter Seals, or any other organization that serves a broad spectrum of people with disabilities, that may be an excellent place to start your search for local resources. Often these types of organizations will have someone on staff who is knowledgeable about adult services in your area. They may also sponsor workshops or talks about accessing adult services, guardianship, qualifying for state or federal assistance programs, etc.. Also, local medical groups and hospitals are sponsoring more workshops and supports for parents of children with disabilities. Examine newsletters and newspaper inserts for such activities.
National Organizations: National organizations such as the Autism Society of America Speaks or Autism Speaks.org can be a good source of information about nationwide programs that can benefit your adult child. For example, they may be able to provide information about qualifying for federal benefits such as Section 8 housing assistance or Medicaid benefits. If you attend these conferences, you will probably find at least some workshops that are devoted to adult issues.
Find Support for Yourself
Helping your child make the transition to adult life will likely be one of the most difficult experiences of your life. After all, for the last 18 to 21 years, this child has likely been at the center of many of your decisions, activities, and relationships. How are you supposed to turn some or all of these responsibilities over to your young adult child or someone else?
Remember, transition is a journey and will take time. The best way that you can support for yourself as well. As you are pursuing some of the above avenues in searching out supports for your child, he sure to find out what supports they can offer you too.
It is natural to find some aspects of letting go to be very difficult, even for parents of children with no diagnosed special needs. But it is a necessary part of parenthood. You can do it!
- If you are networking online or in person in an attempt to locate services for your child, also try to make a personal connection with other parents who are in the same boat.
- Ideally, you can help each other problem solve and can bounce feelings and ideas off one another.
- If you attend local or national conferences, attend some workshops that are devoted to parental coping, marital stress, or the like.
- If your child is going away to college or another type of postsecondary program, check to see if the school offers lectures or other supports to help parents deal with “letting go.”
- If you are truly feeling depressed or anxious about some aspect of the transition process, speak to your doctor about it. There are many medical and psychological interventions that may help.
- If you just want to start with someone to talk to about the grieving process of your child not needing to be as dependent on you, consider contacting your spiritual advisor or leaders within your place of worship.
Practical Realities Post-Graduation
It is important to structure the changes that your child will need to adapt to so they are phased in over time. As suggested in chapter 4, for many students with ASD it is ideal to begin employment and leisure changes during the final years of high school. Then, after graduation, once the individual has adjusted to employment and leisure activities as the primary sources of daily activities, the family can consider making a change in living arrangements.
Adjusting to a Move Out of the Family Home
If your adult child with an ASD is moving into an assisted living arrangement, the trained staff in those facilities can help you determine the appropriate pace for changing the home environment. For example, they might recommend that your child begin by eating one meal a day at the residence to get used to the other residents; or by spending one weekend there to start and increasing time as your child feels comfortable. How quickly you try to transition your adult child to the new home may depend not only on her own ability to understand what is happening, resistance to change, etc., but also on the other residents’ needs for gradual change.
Many of the visual supports discussed in Chapter 5, such as Social Stories, can be useful in helping your child adjust to this change. For example, she might benefit from a Social Story that clarifies that she will still be allowed to visit you at home and how frequently she can do so after she moves to her new residence.
Adjusting to College Life
If your adult child is moving into a college dorm or apartment, it will be important to structure the move so that she has control and feels safe. It may be important for your child to spend extra time on campus before classes start getting used to the new living arrangement. If there is a disability Services office they may able to help you coordinate this. Some college students with ASD might benefit from watching videos about the college and campus life there.
Your family and your college student with an ASD will need to determine parameters for contacting each other in order to promote independence for your child while still allowing her to feel safe. More frequent contact and visits may be appropriate in the beginning with goals for decreasing the contact over time. For example, you may determine that your child will call you once in the morning when she gets up and once in the evening each day. You can then decrease the amount of time for each call and then the frequency of the calls. Given that most college students text or email parents frequently from school, you may not want to limit this unless this type of contact is interfering with school work and social times.
Remaining In the Family Home after High School
If your adult child with ASD is remaining in the family home, you will need to decide how to continue to promote your child’s independence. How will things at home be different now that your child has completed high school and is officially an adult? Issues to consider include:
Day-to-Day Activities: Structured Time
- Do you need to establish new boundaries? For example, if your adult child is capable of going out on her own does she need curfew? Or, if she no longer needs to get up early for school, do you need to enforce a quiet time at night so others can sleep? See Chapter 5 for examples of visual supports that can help your child learn new household rules.
- Do you need to charge your adult child rent? Depending on what kind of government assistance she is receiving, you may need to charge her rent, board, or both. Do you need to help her set money aside to pay it?
- Do you want to change the chores and other household responsibilities assigned to your child? In general, it is a good idea to gradually give your adult child increasing responsibilities, working systematically to teach her as many daily living tasks as possible and to reduse her reliance on family members.
- As more attention is being paid to opportunities for adults with ASD, assist your young adult in continuing to seek opportunities for leisure activities, social skills instruction, or behavior therapy.
A seamless transition plan from school to adulthood leads directly from a structured school day to a structured school, work, or leisure setting following the completion of high school. Often, however, these plans do not translate to reality as intended. A stark reality for parents is that now they are the case managers for their adult children with autism. There are many considerations that need to be taken into account:
Depending on the amount of support available to your adult child in the setting, many of these considerations must be resolved by you. For example, if your son or daughter will spend the day in an adult leisure center, you will need to ask what types of clothing and supplies need to be sent in. When your child was in school, school staff typically took care of such details and sent home lists of items for you to purchase and send to the school. If your adult child will be working in a supported employment setting, you may need to discuss a special diet or perhaps a toileting schedule. Adults with autism who are capable of competitive employment or postsecondary education will have acquired some independent problem-solving strategies. Yet, as stated earlier, they may still need support from other adults as they navigate the real world for the first time.
- transportation to and from work or the recreational activity,
- access to meals and snacks during the day (will your child pack her lunch? who will make it for her?),
- initial strategies to acclimate your child with autism to the setting prior to starting,
- orienting your child to the location and use of restrooms and break rooms, and
- familiarizing your child with the daily schedule itself.
It is important remember that neurotypical young adults often leave high school believing that they want to work in a specific field or study a certain topic. Then, they change their minds two or three times before they settle in on a focus area. The same may be true for the person with an ASD. Such unsettled times present a great deal of stress for all families. Stress is likely to be at a higher level, however, for families of young adults with autism who are undecided about their future.
If your adult child with autism is unsure about future plans, how you respond to her is critical. You will need to seek out supports in your community for help with changing your child’s chosen path. For example, you may be able to get assistance from a “supports coordinator” at your local MH/MR or Developmental Disabilities program. You should also seek support for yourself as discussed on page 94.
Day-to-Day Activities: Unstructured Time
Once students leave the structure of a school setting with built-in opportunities for leisure activities, it can be difficult to find good activities to help fill up unstructured time. As recommended in Chapter 4, you and the IEP team can work as partners to try out different types of leisure activities that your child can do both inside and outside of the home. In the final two years of school, your child can focus more on activities that are available in the community and less on those offered in school.
Balancing community involvement and leisure time activities with other schedules is a challenge for everyone whether they have a disability or not. For the person with autism, this challenge has some variables that may tip the balance one way or another. For young adults who are attending school or are employed but wish to participate in social activities with peers, it may be difficult to ensure that social activities do not interfere with school or work obligations.
One reason is that some people with ASDs have a skewed perception of expectations. They may believe that in order to maintain a relationship with people, they must participate in every activity the group does. Conversely, they may believe that work or school friends need to remain in those settings ands that spending time with them in other settings is inappropriate. Your adult child with ASD may need you or another adult to help her understand such scenarios and may need to continue with social skills instructional strategies that were effective during the school years. Again, using visual supports such as Social Stories, Comic Strip Conversations, or video modeling, as discussed in Chapter 5, may help your adult child understand social expectations.
People with autism who require more support to participate in community and leisure activities may be dependent on others and their schedules for participation. It is important to seek out support from the community to allow young adults with ASD to spend time outside of their living quarters. For example, if your adult child is active in church activities, another church member might be willing to transport her. The same could be true for any type of organized event such as a bowling league, video club, or dancing group.
If your adult child needs adult help to participate in community activities, it will generally be your responsibility to find a volunteer to assist your child. (The exception is with activities such as Special Olympics or recreational activities run by your county or state that must provide assistance, as required by the Americans with Disabilities Act, to enable people with disabilities to participate.) Any volunteers you find to assist your adult child with autism will likely require training, which, again, you may need to provide.