Pathways:Life after Graduation:
Texas Department of State Health Services’ Children with Special Health Care Needs Program Contract, Federal Maternal Child Health Bureau Family to Family Health Information Center Grant, and private donations
Opportunities for employment, post-secondary learning, other meaningful activities, home and networks of support
One of our biggest concerns as parents of children with special needs is, will my child have a safe, happy and productive life as an adult? We all want our children as adults to have things to do and places to go every day, friends and people in their lives who care about them, and a safe, secure, positive place to live when they are no longer living on our homes. Here are some ideas for building that life for your child's adulthood, with a focus on these life domains.
A common fear for parents as their child with disabilities grows up is that he or she will sit at home all day after graduation and do nothing. It's a fear with basis in fact: in a recent survey taken by one of the Texas Education Service Centers, nearly a third of students in special education one year after graduation were doing nothing. A primary answer for these concerns is WORK! Here are some ideas for getting started:
- Encourage your child to gain work experience at home and in the neighborhood.
- Use your public school program to gain work skills and experience.
- Find a supportive work environment.
- Set a goal of finding paid employment in a competitive, integrated workplace.
- Develop a support team to help with the job search.
- Find long term supports to keep your child working.
Here is an article with more detail on each of these ideas, Creative Approach to Work Opportunities along with a list of resources.
The following agencies and non-profits provide employment assistance. You may need to search for your local office:
Look for employment information at these websites:
Another approach is self-employment, a way to help your youth explore the work environment in a creative, flexible way, perhaps resulting in a profitable enterprise. If you are really committed to self- employment, approach a DARS counselor to help you assess your business idea to see if it will be profitable and to write a business plan. (See DARS/VR program, above)
Here are 2 excellent websites on developing self-employment:
We all want our children to continue to have learning opportunities after graduation from public school, but where to turn? Some students might go on to college, either as a full-time student.
If your youth might be interested in a university degree, start planning before 9th grade by talking to a high school guidance counselor. Visit college campuses and make an appointment to talk with someone in the campus office for students with disabilities; college disability counselors can provide useful information on what accommodations are available for each student. Consider going to a two-year school or community college to explore post-secondary learning environments.
Here is great information on the differences between services available in high school and college; (scroll down to the chart):
Here are several TXP2P newsletter articles on going to college:
Here are 2 excellent websites about going to college with a disability:
Alternatives for post-secondary education include vocational training programs and college programs for people with intellectual and developmental disabilities. Here are some examples:
Other programs might offer informal learning opportunities, such as the Centers for Independent Living. Here is how to find a center near you:
Other meaningful activities
Don't forget that recreation and social opportunities are an important part of having a full life and a meaningful day. If you are exploring how to create a positive day for your son or daughter after graduation, consider scheduling activities that your youth will enjoy and benefit from. To get started, brainstorm with him or her (and perhaps others who are supportive and know your child well) by asking these questions:
- what would make him or her feel active and engaged, healthy and happy?
- what supports are needed for your child to get through a day, to go places and do things?
- what goals would your youth like to pursue, such as earning money, staying physically fit, continuing to learn, having social interactions, contributing to the community, and having a routine?
Here are further considerations:
- As you make a plan, don't forget the essentials, such as transportation and times for eating, resting, toileting, and taking medications.
- It might help the process to start with a blank hour-by-hour, day-by-day schedule to fill in
- Besides paid employment and educational endeavors, consider volunteering, self-employment, and community programs for sports, the arts, recreation, and social opportunities. Self employment and volunteering can include simple tasks such as walking the neighbor's dog, watering plants, doing household tasks, running errands for a neighbor, or providing companionship for an elder
Finding community programs and collaborations:
- Look for opportunities related to disability, such as Special Olympics (www.sotx.org/), your local Arc chapter (http://www.thearcoftexas.org/site/PageServer?pagename=membership_find_chapter), and camps or day programs that are aimed at adults with disabilities.
- Here are several programs in Austin that might provide a model for other places: a social program called Capernaum: http://www.centralaustinyounglife.com/capernaum and a Best Buddies program at the University of Texas at Austin that links UT students with youth and adults with disabilities: http://www.utbestbuddies.com/
- Seek out recreation programs through your local parks and recreation department, the YMCA, and other sports and arts programs.
- Identify a hobby, interest or sport that your child enjoys and look for groups in your area, not related to disabilities, that focus on that interest. Go to meetup.com and type in your zip code to see what's going on in your area. (This link is for the Austin area; explore options.)
- Collaborate with other parents to create work, social and learning opportunities; find parents through your school special education program, Special Olympics, neighborhoods, parent support groups or the internet. Remember that TXP2P has several local listservs to link parents and can also help you start a Transition Action Group in your area that can promote collaborative planning and activities.
We all want our children to live, when not in the family home, in a place that offers safety, supports, assistance as needed, fun and fellowship, and the opportunity to make choices. Options might include developing a home with other families and using a Medicaid Waiver Program creatively. Our TXP2P How-to on developing home options leads families through a process that involves:
- brainstorming about your child's future and participating in a planning process
- deciding on a living arrangement, perhaps some combination of living with one or several roommates, a care provider, or another family, with assistance as needed
- securing funding for the rent or mortgage, or making a new space in your own home or on your lot
- securing supports so that your youth will have assistance as needed
- finding a place and figuring out the logistics of the move
- preparing yourself for the transition
Sounds like a lot of work and expense, right? For this reason, it's great to start now, even if you're planning for a move years in the future. You will also need to work on the supports needed through SSI, SSDI, STAR+PLUS. and Medicaid Waivers, as well as private sources of income and supports. Please go to Services and Supports on this website for more information. If your child has a Medicaid Waiver, go to a comparison of the waiver programs to see how each can be used for living situations: http://www.dads.state.tx.us/providers/waiver_comparisons/index.html (Note list on left-hand side for all waivers)
Our list of Web Resources for Setting Up a Home has examples of residential communities in Texas and resources to own or rent a home or apartment
Here is the website for a Family Consortium project in Ohio, which “demonstrates how technology, customized independent living training, and support can combine to allow adults with developmental disabilities to be successful and live independently and affordably in their own communities.” Learn more at www.leapinfo.org/living_with_technology0.aspx Click on "The ILLP," The Innovative Independent Living Project, for a wealth of information and video interviews.
Centers for Independent Living (CILs) are private, nonprofit corporations that might be able to help with finding a place to live; their services maximize the independence of individuals with disabilities. Centers provide: Advocacy, Independent living skills training, Information and referral, and Peer counseling. Find the Center nearest you at www.dars.state.tx.us/drs/directory_cil.shtml
Networks of support
Personal Networks are described in A Good Life, by Al Etmanski, as:
"a group of men and women who voluntarily commit to support a person who is at risk of being isolated and vulnerable by reason of their disability. Each person of the network has a relationship with the focus person and with every other member of the network. Through their relationship they offer support, advocacy, monitoring and companionship." "The best guarantee of a safe and secure future for a person with a disability is the number of caring, committed friends, family members, acquaintances and supporters actively involved in his or her life.”
The benefits of creating a personal network for your son or daughter are that networks:
- provide social opportunities and fun together
- assist with planning for the future, making decisions and carrying out plans
- multiple a family's resources, energy, ideas, and connections
- reassure siblings that they will not face the future care of their brother or sister alone
- provide a way for families to work for the well-being of their son or daughter when the parents can no longer be available.
Networks can be big (a whole church!) or small (2-3 participants) but usually have 8-12 members. Members can be immediate and extended family, neighbors, friends, church members, people who have worked with the focus person, peers, or anyone who wants to participate and cares for the focus person. First steps are to:
- open up your life to more people
- be open and honest with important people in your life about your hopes and concerns for your child
- stop thinking that you are the only person who can take care of your child!
- have the courage to invite a few people to a first meeting
Here is a How-to for creating networks of support, written by a TXP2P volunteer; also TXP2P staff can give you advice by phone or email on creating your own network
Here are other resources for creating networks and an article from mainstream media on how a family opens up their home to new friendships.
The model for personal networks and the book A Good Life come from PLAN (Planned Lifetime Advocacy), a parent organization in Vancouver. Go to plan.ca to learn more about PLAN and to order A Good Life or try buying a used copy at Amazon.com.
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