After the Shriners...

Transitioning from the Shriners Hospital: An Amputee's Perspective

I was born with a birth defect of the lower limbs and as a toddler I underwent amputation, so that I could wear an above knee prosthesis. I still have that first prosthesis, which hangs as an art piece in my home today. I grew up at the Shriners Hospital for Children, as a toddler learning to walk, as an 8 year old baton twirler marching in parades, as a varsity cheerleader, as an adolescent, and as a college student on a journey of self exploration. But my time as a Shrine patient would eventually come to an end… a fact that I completely kept out of my mind until my last appointment at that amazing hospital.

The reality of healthcare is much different outside of the Shrine system. As a child, I went to see my surgeon and prosthetist in the same building, on the same day, with my mom. I didn’t have to worry about copays, or deductibles. I didn’t know what type of insurance I had, or what my insurance plan would or would not cover. There was a whole team of people dedicated to help me and my family, at no charge.

Since graduating from the Shrine system and growing into an adult, I’ve become an active participant in my healthcare plan, meaning I make a point of staying educated and vocal when in comes to my medical care. How does one do this as a young adult in the orthotic and prosthetic industry?

Request all medical records

One of the most empowering things I’ve done, regarding my medical care, is to request my medical records from the Shriners Hospital. I was pretty oblivious to my actual diagnosis and surgery history before thumbing through my medical records. I learned a lot about myself and learned how to articulate the details of my condition with new providers. I was also able to truly realize the depth and quality of care that was provided to me throughout my childhood.

Choose an O&P facility that provides a team approach

The best O&P facilities are the ones that offer a team approach, meaning there is excellent communication between the prosthetist/orthotist, physician, therapist, and patient. Although I no longer am able to see my prosthetist, physician, and therapist all in the same building, on the same day, my medical team communicates well and works together to help me. Also, make sure the facility is ABC certified.

Understand insurance plan benefits

Understand the insurance plan benefits for specific devices. Insurance companies will categorize orthotics and prosthetics differently: sometimes as durable medical equipment (DME), orthotic bracing, or external prosthetic appliances (EPA). Sometimes a prosthetic leg can be categorized under DME, or it can be listed separately under EPA. Different categories may have different coverage benefits. When I call an insurance company for my benefits, I provide my insurance company with specific information, such as, “What are my copay, coinsurance, deductible, out of pocket maximum, coverage limitations, and pre-authorization requirements for a prosthetic leg?” All devices are defined by specific procedures codes that insurance companies use, called HCPCS (pronounced hick-picks) codes. Each component of the device has an individual HCPCS code. It’s best to provide the insurance company with a HCPCS code, in order to obtain the most accurate information. For example, one of the major HCPCS codes used to define an above knee prosthetic limb is L5321. The O&P facility should be able to provide the client with the appropriate HCPCS code for a proposed orthotic/prosthetic device.

Be smart when choosing insurance

Many employers offer a variety of insurance plans for employees to select from. Anyone who depends heavily on orthotic and/or prosthetic care should choose wisely and be sure the human resources representative provides specific benefit information for orthotic/prosthetic care.

Don’t let insurance coverage lapse

The Consolidated Omnibus Budget Reconciliation Act (COBRA) health benefit provisions were established in 1986 and requires the provision of continuation of group health coverage that otherwise would be terminated.

Under COBRA, former employees and family members are allowed temporary continuation of insurance coverage at group rates. This coverage is available in specific instances and can be rather expensive. However without opting for COBRA, insurance coverage would lapse and there would be a period where the individual would be without insurance coverage. The hidden danger with this is: once there is a lapse in coverage, chronic conditions, such as a limb deficiency, could be considered as a ‘pre-existing condition’. Once the individual finally obtains new insurance coverage, the new insurance company may not cover ‘pre-existing conditions’ if there was a lapse in coverage.

Become familiar with alternative funding programs

Some insurance companies do not cover the cost of a brace or prosthetic limb. Programs like Vocational Rehabilitation or Medicaid medically needy can help people with severe and chronic orthopedic conditions. For people who are able and have the desire to be employed, Vocational Rehabilitation can assist in funding for orthotic and prosthetic devices necessary for initial employment, or maintenance of a current job. For those who are unable to work, there are programs that can review eligibility for financial assistance.

Take control

For my last appointment at the Shriners Hospital (a very sad and nostalgic day!), I went alone, without my mother. That was a milestone. It also symbolized the future, where I would not depend on my parents to handle my medical affairs. This can be a shock to the system and can be very difficult. On the brighter side: my parents were proud to witness my independence and self-reliance.

Get connected

Communicate with others who are experiencing similar situations. I frequent a local amputee support group, which I co-facilitate. I also enjoy participating in online amputee support groups, such as the online support group forum on www.360oandp.com.

Children in the healthcare system can sometimes be insulated from the reality of real world healthcare. However, those children will eventually become adults and will have to face that reality. Armed with knowledge, a strong support network, and confidence, young adults can take control and look happily towards an independent future.

Article submitted by Jennifer Latham Robinson, Amputee Advocate