When parents live long term with their disabled child, the arrangement sometimes benefits both the parent and the adult child. There are times when, as a parent ages, she or he is no longer able to handle household chores. Her adult child, although not well enough to work, may assist in tasks at home and, together they are able to complete what needs to be done.
Even where an adult child is too disabled to help, many parents accept responsibility because of their abiding loyalty and concern for their son or daughter who they believe could not function outside the home.
The government and private program support frameworks established to assist these parents of disabled children seem to run reasonably well during the school age years but often dissolve as the child ages out of the system. Although the relationship may continue to work for the people involved, the parent especially may begin to feel insecure and isolated. Often, only the help of other adult children in the family and possibly an extended family of aunts, uncles and cousins enables parent and child to stay connected with the community at large. Sometimes support groups help.
The parent fears her own chronic illness or death mostly because she is concerned what will happen to her disabled child without her. There are no easy answers but these are some considerations.
· An early disability diagnosis helps later on. Where a child is born with a disability or is diagnosed during childhood with a disorder that is chronic and continuing, his or her diagnosis may follow him throughout life. Sometimes parents do not document or discuss the disability because of their need for privacy or to avoid social stigma. This can become a problem. Particularly where the adult child’s issue is a mental disorder, he may resist seeking medical treatment.
Where there is diagnosis and treatment the adult child may be able to benefit from government programs later even if at first there was no intention to apply. Also, a parent may be able to establish a “special needs trust” or a “supplemental needs trust” to benefit her or his child either during the parent’s lifetime or, by Will, after the parent’s death.
Diagnosis of the disabling condition is key. Where the adult child first worked and paid into the Social Security system for at least 10 years (40 quarters) before becoming disabled, he might apply for Social Security Disability benefits. Where he did not work enough quarters but receives no income or very limited income, with a disability diagnosis, he might apply for SSI (Supplemental Security Income). Both of these benefits have some very stiff requirements. As to SSD in particular, a social security disability lawyer experienced in handling these applications can be very helpful. A workers compensation lawyer or social security disability lawyer may also be able to help in case your claim gets denied.
However, on the positive side, recipients of Social Security Disability (SSD) may receive Medicare after two (2) years even if they are not yet age 65. Pennsylvanians receiving SSI are automatically entitled to Medicaid with all of the medical benefits that this entails. These provisions permit some government health insurance that can continue on for the adult child after his or her parent becomes ill or dies.
In addition to all of this, the properly diagnosed disabled adult child may be able to receive property from his parent toward his support if his parent later needs nursing home care. Under Medicaid rules, transfers of property to disabled children in some circumstances are permitted without penalty as to the parent. Without a diagnosis and without a course of treatment over the years, it may become difficult to argue a right to the disability exception at a later date.
· Share Experiences With Others in the Same Circumstances. Those parents who find themselves in the circumstances described in this column should know that they are not alone. Many excellent support groups are out there and many have headquarters locally.
The National Alliance on Mental Illness (NAMI PA, Chester County), a grassroots non-profit support and advocacy organization of consumers and families and friends of the mentally ill is one source of support.
The ARC of Chester County at www.arcofchestercounty.org seeks to empower individuals with mental retardation and other developmental disabilities and their families and to enhance their quality of life.
There is help for those who seek it.
