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Designer Disabled?

By Terri Petrey

Disabled child in your home difficult to care for? Have her body modified to suit your needs. A couple in Seattle claims to have successfully surgically and hormonally altered their child to keep her size and weight child size. Regardless, of which side of the debate you find your sympathies lying, once again, important issues which should be debated and further examined are ignored.

Disabled children do have differing interests than their parents. And, there are many adult disabled who have uncomfortable and unpleasant memories of the problems they had with parents who wanted them to take a different path. At some point in time, every parent of a disabled child, if they are honest with themselves, must face the reality that their child may (and probably should) live an independent life. Even if a child can never live independently, parents must acknowledge the possibility that they themselves may die or otherwise become unable to care for the child.

There are many things that parents can do to begin the process of planning for the transition into adulthood without resorting to such drastic measures. First, the large majority of disabled children do qualify for educational services or accommodations under various federal and state programs. Second, even parents who otherwise do not qualify for federal and state assistance with medical and care requirements outside the school setting, can begin the process of qualifying the child for Social Security before the child turns eighteen. Third, parents with larger financial resources can shelter assets for a disabled child through the use of a supplemental or special needs trust.

Nevertheless, the difficult issue that cannot be addressed by accessing any of the above programs or legal mechanisms, is the day to day grind of raising a profoundly disabled or medically fragile minor child. The simple facts are that we do ration health care and resources in this country. Many parents of disabled children describe themselves as ?have? or ?have nots,? depending on whether or not their kids qualify for governmental assistance. The guidelines for qualification for benefits can seem quite arbitrary.

Even with adequate personal financial resources or governmental assistance, finding good help is still a challenge. This extends to all types of resources ranging from adequate home health assistance to finding competent professionals. For example, the ongoing shortage of speech, occupational, and physical therapists takes it toll on the entire system of services to the disabled of all ages. Indeed, the couple in Seattle cited the difficulty of finding good in home assistance as the primary impetus for the body modification of their child.

The larger societal issues that aren?t getting airtime in this debate include the underlying problems with health care and insurance, the inadequate number of health professionals this country?s health education system is producing at all levels of employment, and, a failure to protect and appropriately assist the families of the disabled of all ages. A dirty little secret in this country is that while the Disabled do enjoy some protection under the law in terms of access to employment and legal remedies for discrimination, those associated with disabled persons do not. Many parents of disabled children, particularly women, can tell stories of not getting jobs or advancement opportunities due to their roles of caretaking a disabled person. Realistically, it?s pretty difficult to keep a disabled child under ?wraps? and parents of disabled children shouldn?t have to.

Full post as published by The Law Blawg of Theresa Petrey, PLLC on January 16, 2007 (boomark / email).