Future Planning for Parents with Disabled Children

With tax season upon us, financial planning for retirement and beyond is bound to be on many minds.  And for older adults with disabled children, planning for the day when they can no longer care for dependent children is a reality that parents didn’t face years ago.  

With medical advances, the life expectancy for people with Down syndrome has increased from 12 years in the 1940s to almost 60 today.  And children born with cerebral palsy commonly live well into their 30s.  According to the Centers for Disease Control and Prevention, 1 in 4 U.S. adults live with some kind of disability that impacts major life activities. 

Planning for care and having the financial resources to ensure a good quality of life should start early; if possible setting up a special needs trust before a disabled child turns 18.  Leaving money directly to your child could affect their ability to collect government assistance.  Choosing a trusted family member or a professional to manage the trust will ensure decisions are made in the best interest of your child. 

According to a recent AARP Family Caregiving article, in addition to setting up a trust and financial support for a child with a disability, parents can also help smooth the transition by writing a letter of guidance about their child’s preferences, routines and wishes.  Information about caregivers, health care providers and other important relationships can also be included.   Assigning a power of attorney to make medical or financial decisions for your child with their permission is also an important component of planning for the future. 

If a move into assisted living or group home is part of the plan once parents are no longer alive or able to care for their disabled child, don’t wait for a catastrophe to make the transition. Give your child time to adjust to their new living situation while you are still able to offer support and visit frequently.

Older parents are often involved in the care of a child with mental health problems, including military veterans suffering from battle depression, physical injuries, PTSD or traumatic brain injuries.  Some veterans with special needs may need a trust to ensure they are able to receive the disability benefits they require. 

Learn more about setting up a Registered Disability Savings Plan in Canada here.  And get more information about future planning for a person with a developmental or intellectual disability in the United States through The Arc center for future planning.