Society not ready to deal with issue of paying parents

GREG NEIMAN
Advocate staff
Red Deer Advocate
5/27/2003 

It seems like such a simple request. A parent of a disabled child, a highly motivated caregiver, approaches a service agency, suggesting that instead of paying someone else to look after the children, pay the parent. 
Who better to look after a vulnerable person than that person’s parent?
And if paying a small wage allows the parent to stay at home to be the caregiver, it could result in the child being given care plus educational and recreational opportunities far beyond what could be given by a contract worker.
And what parent in whom fate places the care of a disabled child wouldn’t want that as one of their options?
It all sounds so logical, economical even, that you’d wonder why agencies that channel provincial care money don’t already have polices in place to pay family members to provide care.
Except that doing so opens the debate to many other issues — some of which touch on the fundamental values of our society — that you can quickly understand why a funding agency, like Persons With Developmental Disabilities (PDD), wouldn’t want to touch that subject.
Why should the parents of disabled children have to work outside the home and have paid workers come in on contract to look after those children?
Well, here’s another question to put that into perspective: why should any parent have to work outside the home and pay for day care? 
Having a child, either a youngster or a grown adult, with special needs does change one’s situation in life; but not the central question, and that is why funding agencies have not been comfortable with even the idea of paying direct family members to be caregivers.
For one thing, once policies are in place that some parents can get a contract for child care for their own children, drawing the lines over who would get that allowance become almost impossible to draw, especially within a tight budget.
There would be no end of examples that could be drawn to illustrate either side of the issue.
One such example would be that of Janet Schmidt, mother of two disabled children, who has a lifetime of experience providing care for her family. One may not have a diploma or degree as a licensed care provider, but a few years of being the primary caregiver of a disabled family member makes for a pretty intensive training program. Twenty-four/seven takes on a whole new meaning.
Schmidt suggested at a public meeting recently that funding agencies should be more concerned with making choices possible within families.
She believes she could provide good care for her children more cheaply than could be arranged through a care contract or an institution. For her, that may well be true.
But if PDD, for instance, provided her with money to stay home, you can quickly imagine the next step in the process. Surprisingly, that might not include an overwhelming number funding applications of parents of children with profound disabilities. These people know how much skill and dedication that requires, and many would probably be quite happy to have professional caregivers make it possible for them to enter the workplace and have a “normal” life, just like parents who take their kids to day care.
The surprise next step would rather be from people demanding the same opportunities for funding that Schmidt has, but under far different circumstances. 
A person whose parent has Alzheimer’s, for instance, could claim they could provide good care cheaper than an institution. Are we ready to fund all families in that situation, or just those who can convince a funding committee they can do the job?
How about a situation where a family member has terminal cancer and wants to spend their last days at home? It may look cheaper than institutional care, especially since home care does not fall under the hospital’s budget. But home care budgets would not be able to handle all applications of this nature.
It should not be the difficulty of “drawing the line” for everyone that determines if one person can make choices. Except that right now, that’s exactly the situation we live with.
Plus, it would be hard to imagine anyone wanting to be on the committee that decides between compassionate requests, based on budget limitations.
So for this and many other reasons, every request for funding from family members is denied.
Until all of society is ready to discuss the value of family-provided care — on a universal basis — some worthy considerations will remain on the shelf.

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