Michele's Blog

Caring For Adult Children With Disabilities

By Michele Scott

Many parents of children with disabilities don't make advance care plans in the event of the parent's or other caretaker's death or disability. These adult children are often transferred to asylums or care facilities parents tried hard to avoid. The physical challenges of caring for an adult child are well known; the mental challenges are less discussed or admitted – despite the physical damage mental and behavior disorders can cause. In 2017 more than 400,000 parents were caring for disabled children over 18 years of age. With 21st century medical advances, lives which previously were lost are saved; in both military and civilian environments.

Finding or identifying a successor for “replacement” caregiver can be hard to do. Spouses, siblings, immediate and extended family members can be hard to convince of the rewards in caring for a family member. Often they disagree with keeping the adult child in the home when finances are not an issue. Many would rather go without luxury items, vacations, home repairs or cable television than care for an adult relative. It takes a special kind of person to voluntarily care for an adult child, especially when other options are available. However in over 70% of cases, finances require parents provide in-home caregiving.

We have all heard of the dying parent's death bed wish asking siblings to take care of each other when they are gone. The children all agree to mom or dad's last request, however, “adults with intellectual or developmental disabilities are significantly more likely to be placed in institutional settings if care plans are not in place when the parent providing care dies or becomes too old or too ill to continue.”

Caregiving of all kinds is an emotionally loaded subject. Parents don’t want to admit they will one day die and family members don’t want to discuss it. Availability of information and guidance on developing a plan is also a challenge. Other than the cost involved, most parents don’t know where to start or what to include in the plan.

Did you know because you care for a child in your home, when you retire and begin receiving social security benefits, your child can drop supplemental security income and switch over to social security disability income? Did you know because you care for your child at home, your spouse can begin receiving spousal social security benefits even though he/she hasn’t turned 62? As a caregiver you can’t take advantage of these benefits if you don’t know they exist. The literature provided by the Social Security Department and information found online can be confusing. Certain circumstances require you to put down the phone, turn of the computer and confront a real person in a real brick and mortar building. Taking a number and standing in line might ease financial pressures and offer peace of mind.

Often, caregivers of adult children are as home-bound as the child they are caring for. Outings are limited to hospital, clinic and doctor’s visits, rather than sitting in offices discussing the future or planning long term care. Our team of registered, professional caregivers is here to help. Home Helpers Home Care provides 24/7 round the clock care; meeting the medical, domestic, routine and specific needs of each patient. We are also a resource for organizations and agencies who can help you plan your child’s future and secure peace of mind. Let us help. Call us.