Okay, for those of you who don’t know, Virginia is facing deep budget cuts like every other state of the union. Luckily we elected a governor who refuses to raise taxes to keep essential services in place.

Let’s pause to let that sarcasm sink in.

Apart from the deep cuts in education across the board, our governor is targeting medicaid. Specifically, he is targeting the waiver system. For those who don’t know what a waiver is, I will give you a brief explanation. The Virginia waiver system is a medicaid funded way to pay for specific essential services for your disabled child or adult. We have an Intellectual Disability (ID) waiver, a Developmental Disability (DD) waiver and an Elderly or Disabled with a Consumer Direction (EDCD) waiver. The reason the EDCD waiver applies to many of our kids is because they evaluate eligibility based on Activities of Daily Living (ADLs) which are deficits suffered by developmentally disabled kids as well as elderly disabled folks.

Our governor is not just planning to limit the budget on these services. He plans to cut the program altogether. Let’s look at how that will affect our commonwealth. The EDCD waiver allows the parent or guardian to act as the employer of respite caregivers. What this means is that everyone who is now employed as a caregiver under this program will lose his or her job. In addition to those jobs, everyone on the state and local level who administers the program will lose his or her job. Finally, and this is really the worst thing, parents who can’t afford to hire help and do not have family who will help out will lose respite care.

I know respite care doesn’t seem like much, but if you are a parent who has a kid that screams, squeals, doesn’t move, can’t walk, or any number of other issues, when do you find time to shop for groceries? When do you buy clothes, diapers or any of the other things we need to keep our lives running? What if you are a single parent who is doing this alone because your partner left when he or she heard the word “disability?” To that end I penned this short and angry missive to our executive.

Governor McDonnell,

I have read both your budget and your web site thoroughly and have found several inconsistencies between what your site claims and what your proposed budget will do to families in the Commonwealth. I have noticed that you have a strong family component on your site, but one of the primary savings in your budget is the removal of the medicaid waiver system that is controlled by families. Removing these funds will damage families across the state. These families rely on the ability to hire and fire their own employees to work with their special needs children. This empowers families and allows them the freedom to find the best possible help to assist with their special needs kids. Imagine not being able to see a movie with your child. Can you picture not being able to take your kid in public because he or she is too loud, moves their hands incessantly, makes loud squealing noises, hurts himself or has tantrums every 5-10 minutes? Can you imagine how hard it is to maintain a marriage in the face of that kind of pressure? When a child demands 80% of your attention, when do you find time to pay your bills, clean your house, go grocery shopping or do any of the other 10,000 things we have to do in our society? Respite care helps get that done, and Virginia saves money by making the parents the employers. That’s right. We don’t ask Virginia to hire and fire these employees, pay them vacation or pay for health insurance. The screening and evaluation is handled by the families themselves, and the families receive no reimbursement for doing this work. However, it is worth it to us because it gives us control over the people who will work with our kids. Not just that, these waiver cuts will affect the elderly. Why would you cut the primary source of funds for the most defenseless segments of our society? If these cuts are made, the people who will pay the price will be Virginia families. Those who have the wherewithal will not suffer as much, but what about the families who do not have the money to hire help? The parents get divorced and their kids end up in institutions. The family dies. This is the message you are sending to Virginia’s special needs families. Please reconsider. Our families deserve better than this.

Ray Nelson

If you live in the Commonwealth of Virginia, please make your voice heard on this. You can contact the governor via his website.

I heard McDonnell on morning radio saying things like “I know these cuts will have a human cost.” What the hell does that mean, Bob? The human cost is this: If you cut these programs and turn your back on the poorest and weakest in our society, their fate is on your head. You bear the responsibility of their early deaths, their bedsores, the divorces and the eventual homelessness. I hope your God can forgive you for that, because I cannot.

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