Every parent is concerned about their child’s future, no matter if that child is 5 or 50. We are always parents, and as parents, we want the very best for our children. As they turn into young adults that typically includes independence, a career, possibly a college degree, and a life in which they are reaching their highest potential. Pretty soon it seems our young adult is turning 40 or so and we wonder how or where they will live for the rest of their life. What “becoming an adult” looks like for each family varies. But for parents of a child on the autism spectrum, transitioning to adulthood and beyond can bring even more worries. Will my child be able to attend college? Will he/she live independently or need support to reach their optimal community integration? How much support does he need? Will she be able to work? Will he have enough money?
Thinking about the future can be challenging and even emotional. However, planning for the future is a part of our lives as adults and as parents we should also help our child with special needs to plan his or her own future. Resources are available to help self-advocates, parents, siblings, professionals, caregivers and other family members and friends begin the future planning process.
The Autism Program of Illinois (TAP) has statewide information, resources, supports and services (provided through our partners) for individuals with autism spectrum disorder. You can read our Entering Adult Life Tip Sheet here. This guide for parents and guardians focuses on “non-school” strategies which provide benefits and protection for a child with autism or another developmental disability. It covers information about governmental assistance, planning for the future, and the various rights and responsibilities that are bestowed when an individual turns age eighteen. An abundance of easy to understand and helpful information is contained in this modest guide.
Last year, The Arc launched the Center for Future Planning to encourage and support individuals with intellectual and developmental disabilities (I/DD) and their families plan for the future. This website explains what person-centered future planning entails. Included are resources for parents and self-advocates such as: expressing your wishes for the future; deciding where to live, managing finances, options for employment and daily activities, making social connections, and supporting daily and major life decision-making. It provides a wealth of information and is a wonderful place to start whether you are a parent, self-advocate, or professional.
Illinois Life Span is another of The Arc’s programs which is helpful in obtaining more information on advocacy, services and supports throughout various life stages. Persons with disabilities, family members or others interested in locating advocacy, services or supports in Illinois can search the database by type of service, agency name, and/or county. Information provided includes: an advocacy toolboxto help navigate the disability system in Illinois, a statewide event calendar, and links to local, state and national organizations that provide helpful information, including specific transition resources. If you do not have computer access, just call 1-800-588-7002 to speak with an Advocacy Resource Specialist.
Finally, if you are seeking state-funded services for your child or adult child diagnosed with autism spectrum disorder or another developmental disorder, they must be enrolled on the PUNS (Prioritization of Urgency of Need for Services) database. Examples of state-funded programs include: in-home and community supports, training and employment programs, respite care and living arrangements. Contact your local Independent Service Coordination (ICS)/Pre-Admission Screening (PAS) Agency to enroll. To learn more about PUNS and find your local ISC Agency, visit http://www.dhs.state.il.us or call 1-888-337-5267.
It’s never too early or too late to begin thinking about your child’s future. Begin exploring resources now; follow the legislation in your state; stay abreast of the latest changes to policy, laws or services, and consult with experts. With some planning and support, your child/young adult/adult can live a life of dignity, accomplishment and success. And they can have an active role in the planning process and decision making whenever possible!
Mary Pelich, M.S.
TAP Network Coordinator
Mary is the mother of four, including an 11 year old son with ASD. Each first Friday of the month the TAP blog will feature a post written by Mary, or another parent or sibling of a person with ASD as our “Family Focus First Friday” series. If you are a parent or family member of a person with ASD and would like to write a blog post, email Mary at email@example.com .