If you have yet to encounter clients who are caring for a disabled adult child, read on, because inevitably you will. According to the Metropolitan Atlanta Developmental Disability surveillance study of 1991-1994, 18 of every 1,000 children born have developmental disabilities, including autistic spectrum disorder, mental retardation, cerebral palsy, and significant hearing or vision loss. Medical advances have enabled persons with developmental disabilities to have a longer life span.

At the same time, these advances have enabled their parents to live longer too, such that individuals with developmental disabilities with caregivers aged 60 and over have reached record highs, 20,969 in the state of Illinois alone as of April of 2001ii. In addition, the National Institutes of Health reported in 2001 that 22.1% of all U.S. adults 18 years of age and older suffer from diagnosable mental illness, and that 4 of the 10 leading causes of disability are mental disorders: major depression, bipolar disorder, schizophrenia, and obsessive-compulsive disorder.

National statistics show that up to 80% of all adults with developmental disabilities and 65% of adults with mental illnesses live at home. Most of the parents caring for these children are between 50-80 years old. Historically, parents of developmentally disabled children were told to place them in state institutions and to get on with their lives. This idea was particularly prevalent in the 1940’s and 1950’s. In the 1960’s through 70’s parents began rejecting this idea and the concept of community- based services was born.

The special education act of 1975 ensured an appropriate education for all children, regardless of abilities. What I have found in my own practice is that there are individuals who defied the directives of their physicians when their children were born in the early to mid 50’s and kept them at home. Surprising as it may be to those of us cognizant of the community/special needs mental health system; some families have never utilized any community agency services or support. For those who have been through “the system” an unfortunate number do not receive services once they achieve the age at which special education services ends in that state. In most states the federally mandated age is 21, (Michigan it is at age 26). Nearly half of all students exiting special education programs require a lifetime of assistance services.

What is most unfortunate in these families is the dearth of advance planning for the disabled adult child. Very often, if there are siblings, the families assume that the sibling will take over care of the disabled child upon the parent’s disability or death. While that may indeed occur, it is an incredible tragedy in the cases that I have encountered in which the sibling is unwilling to provide assistance during the time of need. One of the most disheartening aspects of working with families with special needs is finding that the lack of advance financial planning has created a financial disaster for the disabled child.

If one or both parents die and the disabled adult receives an inheritance, this can disqualify her from the public assistance and service support programs that she has always received. It is imperative that you facilitate the process for elderly clients who have disabled adult children that have not engaged in life care planning. Many estate planning/elder law attorneys are experienced in creating a “special needs trust,” similar to what is done for seniors for Medicaid planning for long-term care. Many organizations that assist persons with disabilities have a “community trust” in which assets are pooled by recipients to ensure a lifetime of care through the service organization. This may include adult foster care, supported independent living, and other community-based services. From working with special needs children and adults for nearly 15 years in the case management arena, I would like to offer some suggestions in preparing your practice for assisting families with disabled adult children: Get to know the community mental health access program in your area. Most community mental health programs are contracted with various agencies for intake into the mental health system for community-based support. Find out who this is and what the referral process entails.

Identify estate planning attorneys and community organizations familiar with life care planning for the disabled. An excellent resource is the United Cerebral Palsy Association, and Association for Residential Care. An excellent planning guide is available through Metropolitan Life Insurance Company. A financial planning tool is available through their website at www.metlife.com/desk.

Understand the psychosocial dynamics of the family with special needs. What I have found is that many of the elderly parents have sheltered their children from being as independent as they may be capable of becoming with the appropriate guidance and support.

There is a fear of the child not needing them, from the parents own “need to be needed”, and resistance to allowing the child to participate in work, and meaningful social and recreational pursuits. When the elderly parent is physically no longer able to provide for all the child’s needs, it is imperative to have sensitivity and progress slowly in referring to community support services. Many parents have, understandably so, a mistrust of a “system” that had at best, given them little support during their child’s childhood and adolescence, or at worst, had directed them to “give the child up.” Plan for coping with special needs crisis scenarios.

Consider the case of “Mary”, age 76, sole caregiver for her husband “Ed”, suffering from moderately severe Alzheimer’s disease, and their only son, “Robert”, age 37, diagnosed with Downs Syndrome and early onset Alzheimer’s disease (commonly associated with Downs Syndrome). Mary suffers a massive stroke, is not expected to recover to independence, and is considered incompetent for decision-making. You are now faced with three people in need of guardianships, 2 in need of immediate care in the home or placement, and long-term care planning for 3 people!

Advocare Care Management is an organization of dedicated aging life care professionals in South Florida. Our team is available 24 hours a day and you can reach us any time. Contact Advocare Care Management and see how we can help you address the challenges of caring for an aging loved one.

Reprinted with permission from Aginglife.org. Contact us today and let us help you.