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I recently received an emotionally laden call from a close friend of mine, Jessica, that sucked the air right out of me. Jessica is the mother of “Chrissy,” a 30-year-old woman with profound intellectual and developmental disabilities (IDD) who lives at home. My agency has provided Chrissy with supports in Jessica’s home for several years. On the call, Jessica blurted out, “Gerald, I have cancer. They don’t think I’m going to live many more years. Will you take care of Chrissy for me?” We both cried; Jessica, not because she was going to die, but because Chrissy would outlive her; me, because I felt the massive weight of my friend’s trust to care for Chrissy, her most valuable gift. Jessica sobbed, “Who will love her like I do? Who will care for her?” I had to sit down, and I thought, “who will indeed?”
As recently as a couple of generations ago, I would not have received that call. People with IDD didn’t live very long. Because of deinstitutionalization and advances in medical care, the current generation of parents is the first, in significant numbers, to have children with IDD outlive them. In reaction, some parents start taking better care of themselves to extend their life. Improving diet and increasing exercise are undoubtedly good for them, regardless of the motivation; however, a more realistic approach is called for. The fact is their child may outlive them by a couple of decades. There isn’t a diet or exercise regime that will extend their life that far.
There are many things to consider in helping patients work through the prospect of their child outliving them, including the following:
• The wants and desires of their child with IDD should be ascertained. Maybe they do not want to continue living with mom and dad now. I’ve witnessed this many times over the years. Sadly, in some cases, the most significant disability the person has is the limits placed on them by an overprotective parent. I have seen many people’s abilities increase when they are in a home of their own, and many surprised and pleased, skeptical parents.
• Some parents assume one of their other children will step in and do the caregiving when they are gone. Siblings often feel that pressure, and many accept caregiving duties as if they are genetically imprinted, but is that fair to the sibling and their family? Is that something the person with IDD wants to do? While it is noble for the next generation to continue the caregiving role, it may not be the best arrangement for everyone concerned.
• Parents should entertain various possible future scenarios. They can contact local government agencies that oversee services for people with IDD and learn of the Medicaid-funded services available in their area. They can visit several group homes or supported living programs, for example. They can learn what they like and don’t like in the programs and the agencies they see.
• Parents should consider placement before their death, which will help with the transition for everyone. If they are to live with a sibling, have them live there for increasing periods. If placement with an agency is desired, they need to know the state’s eligibility requirements. Many states have a waiting list for services. Getting them on the list sooner is better than later. After placement occurs, they can visit the program as often as they want, and their child can come home for visits.
• Some parents create a trust, assuming having a chunk of money will take care of it. State laws vary, and trusts need to be carefully set up, so they don’t make the person ineligible for publicly funded services. Parents should use a competent attorney. Even with a trust, consideration should be made for what exactly it is going to pay for. Throwing money at something generally solves little.
• Many parents have provided care for decades. It has become part of their identity. One parent said, “I have provided total care for Joey for 32 years. Now that he is living in his own apartment, what am I going to do with myself?” If out-of-home placement happens while the parents are still alive, regardless of where, they need to consider how they are going to fill the big hole in their life when their child leaves.
When we work with patients with adult children at home with IDD, as appropriate, the topic should be broached regarding their plans. We need to educate ourselves on the support services available in our area. Often, parents have no knowledge of existing resources for them and their children. Are there group homes, supported living, employment, or other services being provided? What do they look like, what are the names of the providers, and how does placement happen? Armed with good information, we can help our patients plan for their children with IDD outliving them and help relieve their anxiety about it.