How Seniors Can Plan for Their Adult Children With Special Needs

If you’re an aging parent whose adult child has a developmental or intellectual disability, it’s important to plan for your child’s well-being after you’re gone. 

Aging Life Care Professionals® can be a support to the whole family or support system for a younger client. If the parents are still the primary caregivers, they worry about who will care for their child when they themselves die. The care manager’s involvement can be essential in relieving some of these worries as the older parents prepare for their own aging process.

Of course, your child’s financial security will be a top concern. In addition, you will want to ensure that someone will also be looking out for your child’s physical and mental health, and their social needs. Having an Aging Life Care Manager on board can help parents feel confident that all of these aspects of their child’s future will be secure.

At Windward, our care managers work with adult clients ranging from age 18 upwards with various diagnoses including developmental disabilities, Multiple Sclerosis, serious mental illness, substance misuse, and/or brain injuries. When their parents are gone, we can continue working with them to ensure they have every opportunity to age well. Our work with seniors and their adult children with disabilities includes:

Adult Man with Down Syndrome Outdoors with Senior Female Guardian
  • Offering information regarding special needs trusts and long-term care options.
  • Advocating for clients in healthcare and mental healthcare settings.
  • Assisting clients and families with advance directives and future care planning.
  • Navigating veterans’ benefits, Social Security, and other governmental programs.
  • Providing education and support to family caregivers.
  • Helping clients to live as independently as possible and with purpose.

Navigating services

In many locales, governmental or nonprofit case management services for younger adults are unavailable, limited, or have long waiting lists. This is where an Aging Life Care Professional can fill an unmet need. Aging Life Care Professionals are adept at collaborating with various service providers to ensure they are working toward common goals and not overlapping or leaving gaps. For example, clients with developmental disabilities in California are typically connected with a Regional Center. Regional Centers are nonprofit private corporations that contract with the California Department of Developmental Services to provide or coordinate services and supports for people with developmental disabilities. They have offices throughout California, providing local help in accessing available services. Aging Life Care Professionals can work closely with Regional Center staff to ensure the client is receiving appropriate resources, including respite care for family caregivers

Personal safety

Issues of personal safety can come into play with these adult clients, particularly when the client has a mental illness and is able-bodied. Aging Life Care Professionals can ensure the safety of any staff who are helping the client, particularly if the client’s health or mental health conditions are not yet well managed.

Collaboration with the National Multiple Sclerosis Society

A national nonprofit organization that has recognized the value of Aging Life Care Management for their younger adult clients is the National Multiple Sclerosis Society (NMSS). The NMSS contracts with these professionals nationally through their Edward M. Dowd Personal Advocate Program. Individuals with MS can contact the NMSS toll-free national number where an MS Navigator assesses their eligibility for care management services. If the MS Navigator feels that local support is needed, they refer to an Aging Life Care Manager trained and in network with the National MS Society. Windward Life Care is an active partner in this program.

“Many people don’t know where to start, and with the help of a care manager, people with MS are able to navigate these often complex systems to find sustainable solutions to make life with a chronic illness a little bit easier,” says LeeAnn Bellum, LCSW, C-ASWCM, director of case management at the National Multiple Sclerosis Society.

We welcome your questions about how we can help you ensure a secure, healthy future for your adult child after you’re gone. Contact us for a free consultation.

Parts of this article were written by Susan Valoff, LCSWC, C-ASWCM, former vice president of Windward Life Care, and appeared in the Summer 2019 edition of PFAC News, published by the Professional Fiduciary Association of California.