June 6, 2013

Your Advocacy Connection – Having a Special Needs Family Member

By Gail Glockhoff-Long
GolderCare Solutions

Many families have a family member with special needs. In our family, it is a sister with developmental challenges. In one of our church families, it is a person severely injured in a car accident as a teen. One classmate had a stroke very young, leaving her partially paralyzed. In some cases, it is a disease like MD or MS that progressively destroys the body, leaving one dependent on others. In other cases, it is one of many forms of mental illness, Alzheimer’s or dementia. Regardless of the life situation creating the special need, everyone needs an advocate, someone on their side.

In our family, my parents raised my sister to be as independent and self sufficient as she was capable of being. She has mastered the bus system, does her own laundry and can put together a simple breakfast or lunch. She was very helpful to Mom and Dad when she lived with them. She, however, always needed someone to help with her finances, fill out her required forms, and to advocate for her at school, at work and with medical providers. Mom filled that care manager role over many years, with siblings helping from the time we were in grade school. With age, Mom gradually stepped out of the active role and passed the care manager baton to me. My
sister is lucky that she has so many local family members to step in when needed. What would have happened if she had been an only child or if all of her siblings lived hours away?

A special needs family may have worked with an elder law attorney and planned ahead with a legal and financial plan. This is a huge step. But, what about the person? Who will advocate for quality of life issues?

Modern medicine has greatly extended the life span of people with special needs. That extended life span allows their family and friends many more years to enjoy their life. It also means more years to manage their care.

Allow me to clarify my terms. A caregiver is the person that provides the hands on care, from meal preparation to ARC job coach to nursing care. Depending on the individual level of care needed, this could be a family member, a healthcare aid, or a facility. A care manager is the person that directs the caregiver. This person would contract and schedule home healthcare, arrange appropriate housing, schedule medical appointments and transportation, and communicate with medical professionals to obtain optimal care. This person is an advocate fluent with local agencies, programs and products that could increase quality of life for the special needs person. The caregiver and care manager may be the same person, or a care manager may oversee several different care givers.

What happens when the special needs person outlives the care manager? Who will advocate?

Just as a special needs family needs a plan with legal documents for a financial agent, they also need a plan for a care manager to advocate for personal and quality of life needs. As care manager, I have advocated with medical providers for medications and care my sister needed. I have also advocated for her housing arrangement and gone to her ARC assessment meetings to advocate for the best work environment for her. Additionally, I have arranged appointments and transportation, taken her shopping, coordinated other family members to fill in when I can’t, and done all the things that Mom would have done for her. I love my sister. It is what a local sibling does.

But, what if your special needs child is your only child, and you are no longer able to fulfill that need? What if the
special needs person is a spouse, and there are no local children? What if it is your parent, and you live hours away? You need a local set of eyes and ears to check on your loved one, make sure they are being cared for, and communicate their needs back to the person managing the financial side.

An independent care advocate can fill the care manager void. They can be the “in town child” and visit with your loved one, talk with the caregivers and develop a plan for the most appropriate programs for optimal care and quality of life. An independent advocacy group, like GolderCare Solutions, will research and advocate the best solutions for your loved one’s long term care needs. As the expert on local resources, an independent advocate can also work with the family care manager to ease their load and stress.

When you have a family member with special needs, you need someone on your side.

Gail Glockhoff-Long has over 23 years experience in the insurance field. She is the GolderCare Solutions Office Manager and Benefits Advocate and can be found at the GolderCare office located at 4101 John Deere Road, Suite A in Moline, Illinois. GolderCare Solutions provides long term care solutions for both Iowa and Illinois clients.