In a previous post I said that I would be talking to other families about their visions of the future for their child with developmental disabilities. I spoke with Rachel’s Mom recently about the future of her twenty-four year old daughter.
On a scale from one to ten, with ten being total care and one being “I’m OK Mom, I can take care of myself.”, what is the level of care that Rachel will need? Rachel would be a ten.
Do you have a plan in place for Rachel when you are no longer able to provide care for her? “No”
What are your primary concerns for Rachel’s future? Rachel’s Mom’s main priority is that wherever she is, she will be safe. She wants Rachel to have caregivers who are “truly compassionate individuals who will treat her with love and respect.” She wants Rachel to be “well-taken care of” so that she can be “well-received by people.” Rachel’s Mom pointed out how personal care and hygiene can impact how an individual with a disability is accepted and treated by others.
Where would you like Rachel to live when she can no longer live with you? Rachel’s Mom would like to see her in a shared apartment with a roommate who is less physically involved. The shared apartment would be under the management of a provider.
Is there someone to oversee Rachel’s care when you no longer can? Rachel has a sister who would like to be involved in her care. Right now her sister lives out of state. Hopefully in the future she will be in a position to supervise Rachel’s care. Rachel’s Mom does not want Rachel’s sister to take on Rachel’s care full time.
Do you have an idea when you or Rachel will be ready or need for her to live on her own? Rachel is ready now to be independent. She has seen her twin go off on her own and understands the difference in their lives. Rachel’s Mom feels that it would be age appropriate for Rachel to be building a life for herself, the same as her other daughter. She also wants to be able to participate in Rachel’s transition to independence and worries that it will take so long for Rachel to get funding that she will no longer be in a position to do that.
What is your best hope for Rachel’s future? Rachel’s Mom would like to see Rachel in the shared apartment setting with a roommate and able live a fulfilling life involved in her community and able to enjoy the social activities that she loves.
Rachel’s Mom and I discussed the parent’s role in the development of any child, disabled or not. We are called on as parents to raise our children, teach them how to be the best that they can be, and then let them go to make a life for themselves. For young adults with developmental disabilities, Rachel’s Mom says that there is “nothing to let them go to”. With two daughters the same age she is all too aware of the opportunities one has and the opportunities that one doesn’t.