One group of caregivers with unique needs are elderly parents who have cared for a special needs child their entire life.
These children are now adults, the parents are aging and facing their own issues related to aging and increasing needs and the child will likely outlive their parents. Data from 2006 notes that there were 716,000 disabled adults living with a parent over the age of 60. This number is certainly not diminishing. Many of these adult children grew up in an age before the Americans with Disability Act (ADA) was in place and did not have opportunities that this legislation offered more contemporary families. These parents are now seniors and are no longer able to fulfill this caregiving role. They are fearful for the well-being of their child who has special needs.
Talk about this situation. If you have parents and a sibling, it is never too early to start these conversations. Because of the sensitivity of the discussion, it may be of value to bring a care manager or attorney with expertise in this area to the table to mediate the conversation. Parents love their disabled child and are fearful of what will happen to them if they are not there to advocate for them. This has been their lifelong role as a parent and it is difficult to delegate any responsibility to others.
The worse thing that can happen is not to have a plan. As the parents age and sustain physical and mental dysfunction, their ability to care for their special needs child is not as robust. The child may have increasing needs as well as they age.
These children may also be individuals with mental health or substance abuse problems. They may have alienated their siblings based on lifelong behavior. The parent may be taken advantage of due to their inability to prevent neglect, abuse or financial exploitation.
It is important to speak to an attorney about a Special Needs Trust that allows the disabled adult to have some resources for needs that are not covered by government assistance. Without that Trust, assets that are available to the disabled child may negate the ability to qualify for financial assistance.
Do not wait. The situation is not going to change. If the family is willing and able to participate, start the conversation. If there is no family available, find trusted professionals to assist in the planning for the disabled adult. Seeking out help is the best way to assure that their needs will be met when you are no longer able to be there for them.
If you are going through this situation and are not sure where to start, please contact me for guidance and advice.