The moment the door closed for our meeting, our client Sarah, whom we’ve worked with for many years, said “We need to talk about what happened to me over the holidays. “
The Wake-up Call
She had simply been coming down the stairs of her home when she slipped on a tread and landed awkwardly, breaking a few of the bones in her right foot. Recovery from a broken foot is not a quick fix; the first week of complete immobility and pain had been followed by a few weeks on crutches, then a walking cast and then finally, she was able to walk unassisted, resume her daily activities and very importantly, wear her shoes!
The broken foot had healed but Sarah’s life had been upended in a way that she had not anticipated. The accident had opened a window on the future, and given her a view of what life might be like as she grew older; a time when she might not be as strong or nimble as she is now.
Sarah is taking this wake-up call very seriously, driven primarily by concern over the future care of her adult son, Thomas. Thomas lives with her and has developmental disabilities. He participates in a day program but right now, his other activities are limited and they spend almost all of their time together.
Working On A Plan
Sarah had 3 questions she wanted to discuss and plan for:
- Where will Thomas live?
- What supports will he need?
- What resources do I need to make this happen?
While Sarah and Thomas have their own individual lives and circumstances, Sarah’s concerns are far from unique. Many of the parents we work with have given voice to these same worries.
When we first meet someone, we usually begin with some basic questions. We backed things up a bit and asked,
- Who was your first call when you fell?
- Does that person know Thomas’ routine?
- Does the agency running Thomas’ program have the authority to speak to this person?
We have learned that it is important to be sensitive to all considerations, particularly emotional factors, and how they may influence the motivation a parent has in planning. It is very easy to feel overwhelmed and become frozen into inaction. We walk with them, step by step, to keep the discussion focused and moving forward.
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.
|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?|
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.
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.
Cynthia Haddad, CFP®, John Nadworny, CFP® and Alexandria Nadworny, CFP® are the advisors of Special Needs Financial Planning. The multi-generational practice, established more than 20 years ago, and has client relationships now extending into the next generation. John and Cynthia are co-authors of The Special Needs Planning Guide, How to Prepare for Every Stage of Your Child’s Life (Brookes Publishing), a comprehensive guide for families to plan for their future and the lifelong support for their family member with special needs