Lessen the Burden

Photo: The Vanderbilt Kennedy Center

Since discovering Melissa’s medical disability and special needs, it seems that as I think about the future, my mind inevitably wanders to the day when Kathy and I are gone and she is “on her own.” And since she is our only child, I often wonder if things in the future might be different if she had a sibling.

Having a brother or sister with a disability is not something new. In fact, as long as there have been disabilities, there have been siblings whose family is affected. But this generation is faced with some new challenges.

In years past, the disabled were often cared for in an institutional setting after their parents or primary caregivers passed on from this life. In these environments, the disabled individual’s needs were fully cared for. But today, many disabled adults are living in semi-independent facilities. This is an excellent structure because the social support system can provide the basic support and the family can supplement that support based on their loved-one’s needs and their own ability to provide for them. But where this approach can break down is upon the passing of the primary caregiver (e.g. parent) which can create a void that needs to be filled.

This void is apparent to me because without an immediate family member to step in (a brother or sister) we have had to reach out to others who love her; who will likely survive us; and who are willing to embrace the role of overseeing her care within the social services system. Our goal has been to make preparations with the hope that we can lessen the burden on her future caregiver.

These same preparation techniques can serve parents with multiple children who will likely one day assume some level of responsibility for their disabled brother or sister. Some things that I try to keep in mind …

• Respect the Caregiver’s Life. As a parent, we brought forth our disabled child and have committed our life to them. But not so for the caregiver. We must not forget that their support is a “gift” and we must respect their time and resources.
• Promote Independence. By promoting independence to the greatest extent possible while retaining safety and security, we lessen the future dependency on a caregiver.
• Maximize Social Support. Even when parents have the ability to provide fully for their special-needs child, they should identify and leverage each and every possible support resource available—whether it is income, health-care, or social. Integrating the child into the “system” prevents passing this often difficult task to a future caregiver.
• Document Expectations. While it is not possible to define your wishes for your child in absolute terms, you can certainly create a list of things that you would like to ensure that your child receives when you are gone. This can be very important if the child has issues with self-advocacy or communication and is not able to articulate their needs/wants.
• Provide Financially. Asking someone (another child or third-party) to accept the role of caregiver for your child is one thing … but expecting them to provide financial support is another. Our use of a special needs trust that will provide Melissa with the “extras” in life that she appreciates (and expects) is designed to address this important issue.

Let us prepare today so that we can Lessen the Burden on our special needs child’s caregiver tomorrow.

PEACE