The Bishop Family

Like any father, I love my children, provide for their needs, take pride in their skills and accomplishments, and try to prepare them for a secure and happy future.

In the case of our oldest child, a college graduate and current Fulbright Scholar, I can reasonably expect this will be the case.

My equally dear second child, Ali, is a trusting and loving soul. She is a happy child with good self esteem, who takes great joy in most everything she experiences. Her smile is infectious. Yet she faces an uncertain fate.

At this point in time, no assurance of a roof over her head or compassionate treatment by others can be expected if and when her mother Gail and I are unable to care for her.

Why? Ali is mentally retarded, and has been denied to date the care many other children and adults in her position receive. She has no waiver, and no prospect of receiving one for many years - most likely decades.

Until recently, any concerns regarding her future have been kept somewhat in the periphery of my conscious thought. I have a good job, and have been able to pay out of pocket for most of the services she has required.

My wife, an educator herself, has diligently and expertly done all she could to obtain the best possible help. Our school system has also done an excellent job, and we had been assured by her social worker that the gross inequities facing so many disabled children and adults would eventually be rectified.

At eighteen years of age, however, Ali is now an adult. Gail and I are now not only her parents, but after a court hearing also her legal guardians. The end of school, and the services and enrichment it provides is looming closer. My recent diagnosis of malignant lymphoma has made my longevity questionable, and Gail’s chronic problems with rheumatoid arthritis make a future as a full-time care provider increasingly uncertain.

These occurrences in our family are unfortunate but certainly not unique. They serve to illustrate the precariousness of life and the vulnerability of those who can only depend upon their parent or guardian to meet their needs.

What is to become of Ali, and the many hundreds of adults and children like her? With only a handful of new Waivers provided annually in our state for Mental Retardation or Related Conditions (MR/ RC), many of these blameless individuals will have a reasonable chance for appropriate care only when thrust into a financially and socially emergent situation.

Equally disturbing to me as a parent is the realization that some otherwise identical individuals currently receive all the care they require due to waivers granted in past, more favorable legislative environments.

The inequities of the current Waiver system now make it certain that only a handful of the State’s mentally retarded children can expect supervised care in a group home or similar humane setting at an age when most young adults leave home.

This places a large burden on families, extending the 24-7 responsibility of parenthood into a difficult lifetime task that ends only when crisis occurs. The toll on the lives of all family members in this situation is severe.

The responsibility for appropriate compassionate care lies with our legislators and on a budgeting process that provides the Department of Human Services with funding and legislative direction to provide an equitable mechanism to provide services enabling life in the greater community for all those unable to care for themselves. Such a transition should rightfully occur before parents or guardians are themselves too poor, elderly, or infirm to provide for their loved one.

I would therefore ask each of you, members of the Minnesota Legislature, to place yourself in my shoes for a moment. I love my daughter dearly, and can see no secure and happy future for her unless change occurs.

We must provide sufficient waivers to equal the number of children with Mental Retardation or Related Conditions added annually to the rolls of the waiver qualified.

As we continue to under-fund the program, each passing year results in a more desperate and difficult problem. Please look with compassion on my family, and all Minnesota families in similar, otherwise irresolvable situations.

Ali and all other MR/RC persons and their extended families are counting on you to take responsible action now to resolve the current crisis and fund a secure future for these vulnerable individuals.

Allen Bishop

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