This blog kicks off a series illustrating a step-by-step approach to planning for the care of your adult child with special needs. Read Part I.
Part II - Figuring Out the Next Steps
Adjusting Expectations - in a Good Way!
Sarah had a lot to think about but being sidelined had allowed her to step outside her daily life and see things she had been too busy to notice. While she was injured, Thomas had stepped up to help in so many ways. She had always viewed Thomas and their family life through the lens of his dual diagnosis of developmental disabilities and autism. While he had always had household chores, it had never occurred to her to ask him to do more; things like carry the laundry baskets to and from the basement, bring in the mail, and clear the front walk of newly fallen snow. With her direction and support, he was able to unpack and put the groceries from the PeaPod delivery away.
Sometimes it’s the small things that add up to big changes. In thinking about his future living arrangements, Sarah realized she needed to consider both Thomas' expectations and her own. She had some thinking to do about some very big questions.
|What are his capabilities and contributions to the household?
||Was she ready to think about, talk about and plan for Thomas to live elsewhere?
|What are his thoughts and preferences?
||Was she ready to build a network of people who would care about Thomas and be sure he is supported in his life?
The Letter of Intent – The Details of Daily Living.
As a very important first step, we suggested Sarah begin filling out a Letter of Intent, the “Who, What, Where, When, and How” of Thomas’ life. With the information from the Letter of Intent as a starting point, we would then work together to create the next level of Special Needs Planning; creating a Team to Carry On.
Sarah and Thomas’ Team to Carry On
A Team to Carry On is a plan for Thomas’ life when Sarah is gone or can no longer do all that she does today. Planning for a Team to Carry On is an evolving process, and we will be there to advise you every step of the way. There will be three basic steps:
- Tie together all of the Five Factors of Special Needs Planning involved in planning for Thomas’ future:
- Family & Support
- Government Benefits
- And last, but not least, Emotional.
- Discuss who might step in to take on Sarah’s many roles. Think about family, friends, community and professionals and their ability to take on responsibility in the future. There are roles for people to play both big and small and as Sarah had experienced, the small things can make a big difference.
- As an example, Sarah’s next door neighbor, who was very fond of Thomas, had helped be the liaison with transportation for Thomas to and from work for the few weeks she was incapacitated. Might this neighbor be someone to take Thomas to a baseball game each year?
- Communicate with and begin to involve the people on your Team in Thomas’ life today.
- As an example, we have several clients who have begun bringing their adult child’s siblings to our planning meetings. There are many varied roles a sibling may take on; everything from the responsibilities of a Guardian to just being there as a brother or sister.
- Include non-siblings and others– cousins, aunts, uncles, neighbors and professionals to our planning meeting to let them know they are part of the child’s team.
Read more about A Team to Carry On.