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TOO MANY HATS: DON'T ASK PARENTS TO BE SOLE ADVOCATES

By Jenifer Simpson, Policy Associate, United Cerebral Palsy Associations

 

My son Joshua is 10 years old. He is a sociable, communicative young man who likes trains, computers, piano concertos, ice cream, and steak. He enjoys swimming during the blistering hot summers of Washington, D.C. His best friends are Christopher and David.

Joshua has cerebral palsy which is severe enough that every activity of his daily life is affected. He needs someone to help him with eating, drinking, walking, playing, toileting, and communicating. Because of assistive technology, the severity of his disabilities is lessened. Services like occupational, speech, and physical therapies make his life better, as do a variety of special devices.

He uses devices to keep his arms and legs straightened to prevent his spasticity from becoming worse. His therapies both maintain his progress and push him one step further toward independence.

Since birth, Joshua has needed "assistive technology devices." His toddler stroller was specially designed to position him comfortably; it cost $600. I remember being amazed that I had to get a written order from his physical therapist that had to be approved by another doctor before insurance would pay a small portion of its cost. The process took about three months, and numerous phone calls, appointments, and research to find manufacturers and retailers to provide the stroller.

Even though there is a lot of equipment available, the systems that pay for, distribute, and provide Joshua services are not accessible. There are numerous bureaucratic barriers to accessing services and devices continually that frustrate parents. It seemed that, during the first three years, I was at war with the health insurer, the social services agency, and the school system about payment for in-home physical therapy sessions, purchase of a special seating and positioning chair, and payment for early intervention services.

I had constant battles about the coverage for the braces (orthoses) that Joshua needed - which he seemed to outgrow every nine months. The number of therapy sessions he needed was questioned, as was whether it should be linked to hospital services.

From a parent's perspective, the system's infrastructure can seem impenetrable and overwhelming. I spent a lot of time on the phone discussing how a service or device was to be paid for, arguing with the insurer about a pre-existing condition clause, or the reimbursement rate.

A social worker helped me write the correct phrases in my letters to schools, health service agencies, and the insurance company, to get a service or device that Joshua needed. It always seemed that there was some trick I had to learn, a person I had to contact, or a phrase I had to use that would be the password or magic key to having Joshua's needs met.

Last spring, Joshua was in a rehabilitation hospital for two months, following major surgery to straighten the contractures in his legs so that he could have a chance at learning how to walk. Following the surgery, his rehabilitation needs were tremendous. A number of different standing walkers had to be tried to see what would work for him, as he learned how to stand and take steps. Arm, hand, and wrist prostheses were designed and built. Follow-up surgery appointments were made.

Physical, speech, and occupational therapy regimens were put into place. He needed assistance in going to the bathroom with huge plaster casts on his legs, and had to be bathed in a tub with a lift.

After two months, I had a hospital bill of $70,000. What could have been a nightmare for me did not materialize -- because the rehabilitation hospital staff and his rehabilitation doctor took an advocacy stance with the insurer. They documented what he needed and why, and advocated with the insurance company. The insurance company paid the bill with little intervention on my part.

During his hospital stay, I was free to visit my son in the hospital everyday, liberated from the worry about how it all was going to be paid for and how it was supposed to work. I was free to watch his progress and monitor his relationships with the staff and other children. I could take time to be with him, rather than being frazzled with worry about the financing, scheduling, and paperwork that were behind this critical step in managing his disability.

I even developed a better social life; I had more "free" time, not having to worry about coordinating services and agonizing about what had to be done next to make sure surgery and post- surgery rehab happened for Joshua.

 

 

 

There have been several occasions when this advocacy has occurred, and it has always felt like a huge weight was taken from my shoulders. When Joshua was first diagnosed with cerebral palsy at age one, his pediatrician picked up the phone and ordered a physical therapist to come to our house twice each week. Little did I know how rarely pediatricians do this, and that often there is not the capacity in the system to make this kind of instant service happen.

Another time, an assistive technology center monitored the progress of securing Joshua's communication device. Every couple of months, I would get a call from the case worker, asking me if I had been able to locate a top-notch specialist, or if I needed her to schedule an appointment. Over a two-year period, her monitoring facilitated the purchase of the device and helped keep me on track with the task.

What the administrators at this hospital did, what his rehabilitation specialist did, what the assistive technology center did, and what the pediatrician did, was to speak up on behalf of a child with disabilities to ensure that his needs were met. They put the need of the child with a disability first, and saw to it that the need was addressed. It often included confronting authority.

For example, one confrontation was with a health insurance company vice president, who knew nothing about cerebral palsy. This advocacy not only ensured that Joshua got what he needed, but often ensured that the service providers were paid. Because of this advocacy on behalf of Joshua, the rehabilitation center was reimbursed for 24-hour/day service for two months!

People who provide services and devices need to be more involved on behalf of families. For instance, the orthotic specialist could have spent hours telling me how to write a letter challenging the insurance company who first rejected a claim for an arm orthotic. Instead, he discussed it with the rehabilitation therapy team, they consolidated the needed services, and worked with the medical staff to present a rehabilitation package to the insurer.

Similarly, when the assistive technology center Case Monitor for Joshua's speech device realized that I did not have time to make an appointment with a speech specialist, she took it upon herself to ask what times I had available over the next two months. She even called the speech therapist to set up the appointment for us. She made the call to Joshua's father to invite him to the meeting, too.

Small things like this go a long way in ensuring assistive technology devices and services. Parents need it done. More importantly, so does the person with the disability - and just as importantly - from my perspective of ten years of trying to secure services and devices for Joshua, my attitude has changed. If the provider wants to get paid, they are going to have to get involved. They will have to do things in a new way, because I may just be too tired, too fed up, or too busy to stay on top of every detail.

Ten years later, I find myself tired of being an advocate for my son. I see stretched before me years of the same old song of wrangling with agencies, schools, and insurers - learning the latest tricks and phrases to secure the services and devices that he needs. It is time for everyone involved with children with disabilities to take a proactive stance, and share the burden with parents. I say this because I am truly grateful for every instance of advocacy executed on behalf of my son and myself.

When someone actively supports and speaks in favor of Joshua's needs, or defends his demands, it is one less task for me. It frees me to get on with something else, and to have a life that more closely approximates what I imagine life is like for parents of children who do not have disabilities.

To secure general information on the project, contact: Assistive Technology Funding & Systems Change Project, 1660 L Street, NW, Suite 700, Washington, DC 20036 Tel: (202) 776-0406 Fax: (202) 776-0414 Email: atfscp@aol.com.

To secure information & individual assistance on AT funding issues, contact: 1-800-827-0093 (voice) 1-800-833-8272 (TDD), or (404) 919-8305 (fax)

The opinions expressed herein do not necessarily reflect the position or the policy of the U.S. Department of Education, and no official endorsement by the U.S. Department of Education of the opinions expressed herein should be inferred. ATFSCP: 3/96

 

 

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