What does the future hold for my son? As a parent of an adult child with special needs, I have been asking myself the same question for the past 24 years. When my son was very young, I exhausted myself, my child, and all of my loved ones by going from one expert to another seeking this answer. Time and time again, I was disappointed. No one gave me concrete answers. I would hear things like, “You are the expert on your child,” “set goals and work toward them,” “set realistic expectations,” and on and on. What I really wanted was a crystal ball to know precisely what his skill level would be in adulthood and what exact services would be available to meet his needs.
By the time my son was about 16 years old, I finally realized that the “professionals” were correct. I am the expert on my son. No one in this world understands him as I do. How could anyone else possibly know more about my precious little boy (now a man) than me, his loving mother? I have dedicated more time and effort to knowing and caring for him than any other person in this world. My son’s future plan needs to be created by me, my husband, my son, and our natural supports (family and friends who know us) with input from all his agencies, direct care staff, and doctors.
In my role at the Autism Society of NC as an Autism Resource Specialist, I have been getting many calls from other parents with adult children who are also trying to plan for their child’s future. Though I don’t have all of the answers (even for my own child), I am hoping that together, we can start moving toward the best individualized future plan for our children.
Questions to Ponder
In my opinion, these are the first questions for a family to think about when creating the adult child’s plan:
- What will my adult child do (work, school, and/or activities) to lead a fulfilling life?
- How much support does my child need to be successful in the home and community? (Think about at work, school, activities, daily living skills, money management, personal hygiene, interacting with others, navigating their community, safety, transportation, etc.)
- Who will provide the support my child may need? (natural supports such as parents or siblings, paid staff, a friend, a provider agency, or someone else)
- Where will my child live? (Will my child continue to live with family members for the duration of his/her life? Will my child live independently in his/her own home? Will my child require residential adult placement outside the home? Or will we create our own option that doesn’t currently exist?)
- Financially, how will my child be supported for his/her lifetime? (Does the child have the skills to consistently work at a full-time job and financially support him/herself? Will the family support the individual with family funds for the child’s lifetime? Is the child eligible for any financial support from the state or federal government? Does my child have health care?)
Each family or individual will answer these questions differently. When I talk with families about these questions, sometimes they feel unprepared or overwhelmed. There are no right or wrong answers. In the beginning of this process, it’s about thinking through these questions honestly and realistically, researching and connecting with possible options, and then fine-tuning the plan over time.
Sometimes it can be helpful to talk to other parents of adult children to hear what avenues they have investigated. We can learn a lot by the trials of those who have come before us. If you don’t know other parents in your community, please call your local Autism Resource Specialist so they can help connect you or find an ASNC Chapter or Support Group near you.
Below are my personal responses to the questions above. Certainly the plan is a work in progress, but we are getting closer to completion. To keep from becoming overwhelmed by it all, my rule of thumb is to work on just the top three concerns/goals at one time.
What will my adult child do to lead a fulfilling life?
My son worked in a grocery store for four years (part-time two days per week). He worked independently at the job site for one year, but the social components were difficult. He had a one-on-one job coach at the site for the next three years, and this was funded by his Innovations waiver.
After high school, my son attended a college program for two years that was specific to individuals with intellectual disabilities. The program ended, and my son stated that he didn’t want to go to school again.
My son is activity in the community. He participates in programs through specialized parks and recreation in nearby towns; Special Olympics of NC; and Abilities Tennis. He takes private tennis lessons, private cooking lessons, and works out at a local gym. He attends a day program two days per week. He has one-on-one assistance in our home and in the community, which is funded by his Innovations waiver.
How much support does my child need to be successful?
My son has an Innovations waiver and an ISP, individual support plan. We have developed goals that include some personal hygiene tasks, money-management skills, communication, creating a daily schedule, cooking, shopping, interacting with others in the community, and scheduling appointments.
We currently provide a great deal of support, especially related to organizing, scheduling, planning, and transportation.
Our son can participate in a small group (1 to 10 ratio) setting with peers. Most of the activities he participates in have a group leader.
He does best with a visual schedule so he understands what is happening and in what order.
When presented with a new task, he does best if someone first models what to do. When he attempts a new task himself, he is most successful if he has a visual task analysis with step-by-step directions to follow.
Who will provide the support my child may need?
Mom and dad (primary care providers and fill-ins when other supports aren’t available), direct-care staff from provider agency, Care Coordinator from the MCO, primary care physician, private-pay staff, friends and neighbors, and staff from Parks and Rec programs, Special Olympics, and Abilities Tennis
Where will my child live?
Currently, my son lives at home with my husband and me. He has no siblings, and we have no relatives in the state. I worry about the future, because I know that living at home with us isn’t a long-term solution. One day, my husband and I will not be able to provide the level of support our son requires.
I have read the ASNC Residential Toolkit. I have discussed these options with my son’s care coordinator, and I have visited some of these options. I do understand that inevitably one of these placements will have to be the option selected, but at this time I am unable to move forward. I can still provide the support my son needs in my home.
Certainly there are parents who have created their own residential solutions. I have heard positives and negatives. At this point, I haven’t devoted any time to considering this, so we haven’t included it in our plan.
Financially, how will my child be supported for his/her lifetime?
Currently, my son is not able to support himself financially through employment.
We connected with the MCO many years ago. My son was found eligible for DD (developmental delay) services. He was put on a waiting list and when funding was available, he began to use his Innovations waiver slot for services such as respite care, community guide, in-home skill-building, personal care, and supported employment.
When my son turned 18, I contacted the Social Security Office and filled out the application for SSI. He now receives a small amount of money each month from the Social Security Office.
My husband and I paid a local attorney to set up a special needs trust for our son. This trust will be funded upon our deaths with all of the money we have saved. We also wrote a letter of intent with our wishes for his future.
Our son’s primary health insurance is through my husband’s job, and he has Medicaid as secondary coverage. (Medicaid comes with an Innovations waiver and/or with SSI.) One day, my son will not be covered through our private health coverage, so we are thankful that Medicaid is there for him.
An ABLE account is an option we would like to explore further. It has been on our to-do-list for over a year, and I am sure we will tackle it in 2017. Our thought is to make an appointment with the lawyer who created the special needs trust, update the trust, update the letter of intent, and then discuss the pros and cons of the ABLE account for our specific situation.
We have shared with our immediate family that if they have a will and are thinking of leaving any money to our son, to please first talk with our attorney. (It was an awkward conversation, but one that had to happen.)
Every person’s journey in life is unique. Some of your adult children may not need any supports, while others may need a significant amount. The important thing at this time is just to start thinking about the future, asking yourself the questions, and formulating an individual plan.
Nancy LaCross, an ASNC Autism Resource Specialist in the Raleigh area, can be contacted at firstname.lastname@example.org or 919-865-5093.
Find an ASNC Chapter or Support Group
Connect with a local ASNC Autism Resource Specialist
ASNC Toolkits: Note especially Residential Options and Accessing Services, with information about the Innovations waiver and connection to the MCO
Applying for SSI (Some information in the Accessing Services toolkit above)
ASNC Bookstore (many resources related to adulthood)