Time Marches On

While many people are thinking through 401 (k)s and Roth IRAs, planning for the future takes on much heavier meaning for families with adult children with disabilities.

Last week, Wendy Kaufman of National Public Radio (NPR) reported on a severe disabilities topic as part of a series on social entrepreneurs on All Things Considered. The report chronicled the work of Al Etmanski, whose daughter, Liz, was born with Down Syndrome. His work on behalf of families and children with disabilities evolved into the Planned Lifetime Advocacy Network, or PLAN, twenty years ago. PLAN provides for long term care and support for aging children with disabilities with a two-fold plan addressing both social and financial concerns.

This story brought to mind the work of Dr. Anne Larkin, Professor Emerita, Lesley University, who has been a champion for disability rights through advocacy and work for her entire professional career. Dr. Larkin is also the parent of an adult child with a disability. She co-founded Personal Advocacy and Lifetime Support (PALS), which began as a non-profit organization, modeled after PLAN. The founding mission of PALS was to assist parents and caregivers of adult children with disabilities to create, establish and maintain a lifetime plan and network for their loved one in order to ensure a secure future. PALS, much like PLAN, assists families with thinking through all aspects of the process and empowers them to create networks which ensure that their loved one will be cared for and provided for after they are no longer able to do so. Last year, PALS merged with ARC.

Clearly, the work of such advocacy organizations makes a significant impact on the lives of families of children with disabilities, but these examples immediately expose the lack of services available to individuals and families beyond the school experience. The Individuals with Disabilities Education Act (IDEA) provides for ongoing support throughout the school experience, including transition to adulthood. While the provision of that level of support has not been considered throughout the lifespan, it is noteworthy that the little support that does exist is, at times, available due to the sole effort of the families.

Puts the worry about bottom line in the 401 (k) into perspective, even as time marches on.