The Dragon Is Slain!

Two and a half years ago, I requested that Ashley’s health insurance program provide modifications to our bathroom. I strongly believed that with the appropriate modifications and support, Ashley would be independent in her personal care tasks despite her significant disabilities. I knew then and I know now that she can bathe and shower by herself – she can wash her own hair and brush her own teeth – and the only support she needs for toileting is a grab bar. But, she has been unable to do these things because she did not have the appropriate supports. Ashley’s insurance program, despite the fact that they have never laid eyes on either Ashley or our bathroom, decided that she did not need the supports.

When making the initial request, I made sure I had all the necessary paperwork to back up the request. I had reports and letters of medical necessity from Ashley’s pediatrician, her neurologist, her ophthalmologist, and her occupational therapist, the person who had been working for many years to teach Ashley how to accomplish her self-care tasks. However, within a few short days of making my request, the insurance program denied it. Their reason – the type of insurance waiver Ashley was on didn’t allow for environmental modifications. There was no discussion of medical necessity, or the fact that the modifications would ultimately reduce costs in other areas. It seemed that the insurance program would prefer Ashley be institutionalized and ‘taken care of’ rather than provide the tools she would need to become independent. So, I appealed, or rather, I contacted an attorney and then appealed the decision.

The lawsuit weaved its way through the denying organization, a so-called independent hearing officer (who just happened to report to the head of the denying organization), Federal court, and back again to the denying organization. Witnesses were subpoenaed and interrogated. The Attorney General’s office for my state became involved, and finally a trial was held. Six months, yes six months, after the trial, the ‘independent’ hearing officer ruled – the request was again denied. I’ve written previously about all this, albeit a little obtusely since the case was still in litigation.

As my attorney and his staff were preparing yet another appeal to yet another court, a settlement offer was proposed, allegedly to hold down the costs of more legal wranglings. So, where are we today? According to the details of the settlement agreement, all (yes, ALL) of the modifications I originally requested will be made. In addition, remember the reason I was given for not granting the request initially – that the type of insurance waiver Ashley was on wouldn’t cover environmental modifications? That has changed also. Any person on that specific waiver will now be able to access up to $5000 per year for environmental modifications.

I have contacted a contractor who will begin the modifications in early July. Ashley will finally have the chance to reach her potential in the area of independent living, and her future now holds the promise of staying in her family home for the remainder of her life. Was the fight worth it? To me and to Ashley, most definitely. To all the taxpayers who bankrolled the long, drawn out battle – doubtful.