One of the biggest worries aging parents of developmentally and physically disabled adult children have is who's going to take care of the children who need 24-hour care? How many senior parents of adult children with severe disabilities have special needs trusts or can afford them? Nationally, the U.S. Census figures report that 20 percent of adults below age 65 have developmental or physical disabilities – and almost 70 percent of the families of special-needs adults in a recent MetLife survey said they worried about their offspring's future.
Seniors want to have an answer as to what happens if a child has a severe disability and is not self supporting and independent financially? How will care be provided at a time when the parents are gone or in need of help with basic living skills themselves? Who will provide the care? And how much will it cost? Check out the March 3, 2013 Sacramento Bee article by Anita Creamer,"Aging parents worry about adult children with disabilities."
Older parents of children with severe disabilities wonder who will care for the children when they are not able to any longer? Many seniors face the issue of having adult children with special needs. What happens to the children after they're gone if the children aren't working and living on their own, and if there is no money to hire 24-hour help?
If you look at one city such as Sacramento, for example, the Alta California Regional Center, which serves 18,250 people with developmental disabilities in 10 counties, has about 5,000 adult clients who still live at home with their parents. Check out the sight, " Seniors with Adult Children With Disabilities Need to Consider Special Needs Trusts."
Aging parents of adult children with disabilities want to know more about affordable independent living
Aging parents with increasing need for support themselves are still taking care of their grown developmentally disabled children. But what happens when the parents become too weak to continuing caring for adult children with special needs? Many of these parents are in their 70s and 80s with adult children in their 40s and 50s who need care at a time when the parents are beginning to think about their own needs such as moving to assisted living or calling in help. But many can't afford to pay for help for themselves and their adult children with special needs.
Parents of adult developmentally disabled may not be able to afford legal counseling to put together a special-needs trust to care for their offspring. Many may not know about a special-needs trust. Others don't know which residential options are affordable and which have a laundry list of complaints and law suits. Parents may not know which facilities have a policy of no CPR if someone falls ill. And others can't afford long-term care insurance because the premiums are so high. If a senior is retired, has no pension and little savings, what's the options if someone wants to remain independent in his or her own home and still be able to have care provided for the parent and the adult child or children with special needs?
Seniors could become advocates for the developmentally disabled, especially if that person has adult children with special needs. Some seniors become life coaches or health coaches to other parents with special needs adult children. That way they can learn about the resources and help others or team up with a group of seniors with adult children who have special needs. Basically, seniors with adult children who have special needs are looking for some one qualified to help them. Thinking about what will happen to your grown child after you're gone is painful.
For children with special needs who already hold jobs, the adult children may be able to understand how to implement a plan for employment and independent living skills. Many adult children with special needs hold jobs. Others need the right contacts to find jobs and training. Some of these developmentally disabled adult children do assembly work such as putting together small parts or gadgets.
Not all adult children have developed patience and social proficiency. More training may be needed, if funds are available to teach basic life skills. For example, who will be there to teach adult children with disabilities how to be punctual at work if they function at the level of a three-year old?
Many of these severely disabled adult children aren't living independently of their aging parents, or in some cases, grandparents. These children depend on their parents. Some adult children with disabilities need 24-hour care. The answer is to make a plan for what happens to the adult children in the future, when a senior is no longer able to be there for children who need 24-hour care. Who pays? And who's available? How do you check out the person to make sure the adult child is not being abused when away from the aging parents?
And what happens when a parent develops "elder rage" as a prelude to dementia and begins to abuse the adult child who can't live independently and needs 24-hour care because of physical disability or developmental disability, for example, an adult child who functions at the level of a three-year old? Seniors with adult children that have special needs have to deal with living one day at a time, but the future will be there before they know it. And planning is necessary. Check out the site, "Family Support Groups - EMARC."
The question remains whether anyone will be there to help without neglecting the adult child or the senior when the money runs out? Can a plan predict who's safe to take care of adult children with special needs without abusing them or the aging senior parent? And does it all depend upon how much money is available for care -- when the care must be given by strangers?