The New Hampshire House of Representatives recently passed a budget that essentially eliminates community supports for families of people with disabilities. This budget is currently under consideration by the New Hampshire Senate. Bill Smith, a TASH Board Member, recently offered his testimony to the Senate Finance Committee to explain why the proposed cuts are fiscally, morally and clinically irresponsible. The following is a text of Bill’s testimony:
Senate Finance Committee
My name is Bill Smith. I’m the parent of a 7-year-old boy with X-Linked Hydrocephalus. I’m also a small business owner and a member of the national board of TASH, a disability advocacy organization. I am here to urge you not to support state budget proposals that would cut funding for families with children with disabilities or area agencies providing support for those families. Such cuts would be devastating to New Hampshire families and would have a far-reaching negative economic impact on both the state and our cities and towns.
As a small business owner and the father of a child with significant disabilities, I understand both sides of this issue. I agree that we need to reduce the size of the state’s budget. However, I believe that these proposals would ultimately have just the opposite effect–actually increasing the amount of money the state has to pay to care for people with disabilities. Cities will also suffer financially as they are forced to pick up more of the cost of care.
As a parent, I know first-hand how important these services and organizations are. For many parents, they provide the essential support that makes it possible for us to care for our loved ones at home. The area agency system actually grew out of the successful effort to close the state’s institutions for people with disabilities. Those institutions were horrible places where patients were treated more like prison inmates, and where abuse and neglect were common. Indeed, where they were the norm. Institutions like Laconia State School were closed in the early ‘90s by the courts, and a community support network was created that became a model of effectiveness and efficiency for the rest of the nation. This community network must be preserved.
For many parents of children with disabilities, caring for our loved ones is a daily struggle. We must try to balance jobs and family with crowded therapy schedules, medical crises, and unique costs that often overwhelm us. I’m fortunate. As business owners, my wife and I have flexible schedules that permit us to get our son to and from therapy sessions and medical appointments. Most don’t have that luxury. And while our medical expenses for insurance and care exceed $25,000 a year and rise by 20-25% every year, we are more fortunate than many because we can at least afford to purchase insurance. At least for now. Many are not so fortunate.
Perhaps the emotional toll of having a child with a disability is most trying. We live every day of our lives with the knowledge that our children are much more vulnerable than typical kids. They are more susceptible to medical crises; they are far more likely to suffer physical or sexual abuse; and in many communities they are likely to be undereducated. As a result, we parents constantly have to be vigilant, far more so than with our other kids. It can be an exhausting life. Many families could not succeed without the supports we receive from the state’s area agencies. The proposed cuts would destroy the network of local support on which we rely, and would devastate many of the families they assist.
Many parents will have to quit their jobs or become underemployed to make more time to care for their children. These cuts will probably tip the balance for many families, forcing them into bankruptcy.
I know that you are all pro-family. You must know that these proposed cuts would hurt families across New Hampshire. And we aren’t talking about just a few families. One in every thirteen children has a developmental disability; and approximately one in every seven families has a child with a disability. The damage of these cuts would be widespread, and it’s fair to say that they are among the most anti-family actions proposed in some time.
But these cuts won’t just hurt families, they’ll hurt the state’s economy as well. Currently, the vast majority of children are cared for in their own homes by their own families. Obviously, this is the best way to provide care. It’s also the least expensive. By far.
Studies show that home-based care is approximately five times less expensive than institutionalized care. And make no mistake, if you dismantle the state’s network of community supports, you will force families to turn to institutionalized care for their children. Many families just won’t have the financial resources or access to care that they need to safely and effectively care for their children. Children with disabilities run serious risk of becoming wards of the state, rather than independent citizens.
These cuts will also be job killers. Thousands of dedicated caregivers and healthcare professionals will lose their jobs. This means thousands of New Hampshire residents who will become a burden on the state’s unemployment system; won’t have money to spend in the state’s stores and other businesses; and will struggle to pay their mortgages, utility bills, and other day-to-day costs.
These cuts will also cost the state millions in federal matching funds. The federal government pays a significant portion of the cost of community-based care, and these cuts imperil those federal funds. Clearly, the bills you are considering would have significant and far-reaching unintended financial consequences.
Finally, the proposed cuts to community supports are illegal. Courts across America have stricken down similar budget cuts because they violate the Supreme Court’s 1999 Olmstead decision. You need to ask yourselves, are you willing to spend hundreds of thousands–perhaps millions–of dollars fighting a battle that’s legally, economically, and morally indefensible?
If you dismantle the state’s system of community supports, you will create an unsustainable situation. Community-based care is by far the least expensive and most effective way to care for people with significant disabilities. The system of care that will grow from the destruction of our community-based network won’t work and will cost far more than we are paying today. Those who follow you in future years will have to rebuild what we have today. Rebuilding will take decades and cost the state–cost your children–tens of millions of dollars.
Please reconsider this plan dismantle the state’s community care network. If it passes, it will devastate thousands of families across the state, and it will have significant negative financial repercussions for years to come.
Everyone here who has a loved one with a disability knows that life isn’t fair. We live with that every day. We aren’t asking for special treatment or favors. We just want you to use common sense when you make these decisions. The proposed cuts to community support make no sense financially or for people who need care.