Is Your Faith Community a Place of Rest?

I have been doing a considerable amount of work with faith based communities in trying to help them be a place of rest and comfort for families that are facing the challenge of disability. I have used my skill as an educator and have drawn on my personal experience to help impart the knowledge that families are looking, desperately seeking a place of rest from the everyday challenge, fight, negotiation, patience, tolerance and persistence that are required to meet the needs of a person with a disability.

Meeting the needs of child can be difficult for any parent but add the additional complication of medical providers, impossible insurance companies, school and system policy, even legal procedures and a parent can come close to complete breakdown. Hillary Clinton was famous for her book about raising children entitled: "It Takes a Village." I have heard one mom comment that if it takes a village to raise a typical child it takes the resources of a small country to raise a child with a disability. I agree with this 100%.

Enter my day with me. My son's power wheelchair had a malfunction. Currently a part in his hand controls is in desperate need of repairs. If the button affected gets hit in the wrong way the chair will be rendered immobile, similar to the complication of running out of gas on a crowded interstate with two broken legs and no crutches within reach while facing a change of health insurance which allows for only two options for the in network benefits to be in affect that would allow for the repair of the broken legs which you learn about only as you are wheeled into the ER. (Did you keep up with that?)

This is what today is like for me. A phone call to the insurance company renders the following information after a 20 minute wait and two less than helpful attendant
who were "only doing their job" and following the necessary procedures:

Me: "My son's Permobile Wheelchair (motorized I explain) is in need of repair. The company that provided the chair does not accept United Healthcare."

Them: "Let me search our data base for a provider within a 30 mile radius."

After several moments of silence the attendant comes up with a list of providers under the category of DURABLE MEDICAL EQUIPMENT. Please note that durable medical equipment covers everything from wheelchair repair to oxygen.

Me: "None of those providers are authorized to fix a Permobile wheelchair. Do you have any listings for Nashville?"

Them: "What is the zip code?"

Me: “There are several zip codes in Nashville; I do not know them all."

Them: "I can't help you without a zip code."

Dialogue goes on for several moments as I try to get her to understand without access to a phone book or the internet at this time I can't identify the zip codes. I am additionally trying to get her to understand that taking a Permobile to an unauthorized dealer is similar to taking a Volvo to a Chevy dealer.

I insist the attendant put several notes regarding our conversation as well as the urgency of the repair into her database, (remember his chair is similar to a person's legs, it is his main form of mobility). I don't know how long the wait will be, she doesn't know how long the wait will be. I struggle to keep the tears back as I pray for faith as well as the patience to wait. I know this is only the first step in the process. Once approval is given, there is some type of negotiations as to the cost and then there is the process of securing a doctor's prescription from Vanderbilt for the repair (a similiarily difficult maze to get through) followed by taking the chair for an assessment, waiting for the part, taking the chair back and hope for a fix on the first shot. (Still with me?)

Sometimes having a child with a disability is like this. Days and weeks of problem solving and difficult procedures make a parent very tired and we struggle for respite from the fight. A faith community is a good place for respite but only if a complicated process of educating and overcoming attitudes is not necessary.

Finding caring and compassionate individuals that will listen to the frustration and anxiety in a parent’s voice is often difficult but vitally necessary! Problem solving, taking some of the weight off weary shoulders is one of the best remedies those who care can offer. In order for a faith community to offer this, they must be willing to enter into the anxiety with the parent and devote time and energy to the needs, knowing often the parent will not know what they need. Sometimes it may just be a prayer, time and a kind ear. Other times a more complicated and innovative solution is required. Caring and compassionate individuals must be willing to enter in and offer peace, hope, and solutions.

Be willing to make things as easy as possible. Cheryl Rosenberg stated in an article for "Church and Society," stated: "It seems (describing parents) the have to fight for everything that their child needs - they do not want to fight for their child in church."

Blessings