This blog kicks off a series illustrating a step-by-step approach to planning for the care of your adult child with special needs. 

We have just been quoted extensively in Planning for your adult child’s care, when she’ll never be able to care for herself,  published in Considerable, an online magazine. 

Part I - Meet Sarah

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.

Related resources: 

Part II - Figuring Out the Next Steps