When Crisis Hits Persons with Disabilities
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A recent Wall Street Journal article highlighted the challenges facing families of people with disabilities when caregivers age. Approximately 2.9 million people with developmental disabilities or other significant functional limitations live with caregivers who are age 55 or older. These caregivers are usually parents. As these parents age beyond their ability to care for these adult children, the children need a more supported and formal living arrangements.
There are long waiting lists for various services to help people with developmental disabilities live in the community. Approximately 80,000 people nationwide are on such lists, with Texas alone having 35,000 people waiting for services. Spending for home- and community-based services increases annually, but it is not growing enough to meet the heavy demand. Future options may be limited as states and the federal government look for ways to control Medicaid spending, which is the main funding source for these programs.
In one particular case a 79-year-old mother was admitted to the hospital with severe wounds on her legs. She refused to be admitted unless her 41-year-old son could stay with her. The mother was the primary caregiver for her son, and she had no place for him to go in times of crisis. The mother took her son with her when she cleaned houses. The son would pick up the mail and take out the trash, and he had a job as a bagger in a grocery store. Many parents in the mother’s situation do not think their children will outlive them, and they do not investigate options for the children to live on their own. These parents fear that something bad will happen to their children, or they are not satisfied with the lack of options available. In this case, the mother had a harder time getting around, and with bad circulation, cuts on her legs became severe wounds. The son eventually called 911, and the mother was taken to the hospital
The hospital’s clinical liaison found a semi-private room for the mother and son. When the mother’s stay was extended, and it was clear that she and her son would not be able to return home, the clinical liaison became the son’s de facto caregiver. The liason called family members, neighbors and friends, as well as various social services agencies. The closest supervised residential program was located nine hours away. The liaison was able to arrange for a temporary stay at an assisted living facility where the son flourished. Unfortunately, with an income of $1,200 per month Social Security, the son was unable to stay at the facility long-term. He returned to the hospital with a medical condition, and he will be released in the near future. The mother remains in the hospital on a ventilator, and the son visits her often. The clinical liaison is continuing to search for an appropriate local residence for the son, but if nothing is available, then he will move in with the liaison and her family.
Parents of children with disabilities need to plan for their own disability or death. Sometimes placement in an appropriate residential facility during the parents’ lifetimes gives the family the opportunity to explore this option and see if it will work. This also gives the family the opportunity to be on a waiting list and hope for placement while the parents are still able to monitor the transition. The attorneys at Oast & Hook can assist parents of children with disabilities with planning for themselves and their children.
O&H: Allie, we know that some offices and shops permit pets to live in their facilities. Have you heard about other places that permit pets to reside on their premises?
Allie: Yes, I recently heard about the century-old Algonquin Hotel in Manhattan, whose concierge is a cat named Matilda. She prefers to lie on the luggage cart rather than preside at a mahogany desk. I heard that if you hold out your hand, she will most likely lick it. (I would be looking for a treat if you held out your hand to me!) The hotel has had an official feline concierge, also known as a chat de la maison since the 1930s when the owner adopted a stray cat that wandered in off 44th Street. Matilda is not a sponger; she has a job (schmoozing guests), her own station (daybed by the door), and her own e-mail address. Matilda told me by e-mail, “The best part of my job is meeting new people. The worst part is having to be nice to people who bring their dogs.” She also says it would be nice if guests tipped every once in a while.
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