Thursday, February 25, 2010
The Honorable Delegate Abbott
On Tuesday, I wrote about the despicable comments made by one of our General Assembly members. The public outcry has been great, and as of Wednesday morning, over 1100 people had joined the Facebook group calling for Delegate Marshall's resignation.
We Virginia parents are not so naive as to think he really will resign, but I do believe our message is being heard by some at least.
On Tuesday, another of our state Delegates also spoke against Delegate Marshall's ignorance. I have included the full text of her speech below. It is very powerful and I pray that the other members of our General Assembly listened and heard.
Delegate Robin Abbott, I applaud you and respect you more than I can say.
MR. SPEAKER – I RISE FOR A POINT OF PERSONAL PRIVILEGE
Mr. Speaker, members of the House,
30 years ago today was a very joyous day for America. Do you remember why? 30 years ago today we were celebrating the MIRACLE ON ICE where the American Hockey Team won the gold medal at the 1980 Winter Olympics.
For me personally, there was other cause for joy …. It was the miracle of the birth of my son, Nicholas. I remember looking at him and in all senses he was perfect. Over the next several weeks, however, Nicholas was failing to thrive. I learned that he was missing over three fourths of his brain and that he had no vision. His prognosis was not good. The doctors told us that if Nicholas survived he would never walk, talk, or even know that I was his mother.
So today, Mr. Speaker, I speak on behalf of all the parents of disabled children.
As a freshman member of this body, I look to the more senior members to help me do the best job possible of representing the people who have elected me in Newport News and James City County.
Because this House has demonstrated concern for individuals with disabilities, particularly individuals with intellectual and developmental disabilities, I feel comfortable in sharing with you what life is like for a parent of a child with severe and profound disabilities.
When we realized that our child has disabilities we could never have conceived of the joy that he has brought to our lives. But it was not easy. It was not at all easy to hear the words about our child and even more, it was torture to have to give up the dreams we had for him – dreams of activities together, learning together, school, sports, friends, hobbies, career – in short, all the dreams each of you has had for your children.
Oh, we were told that a facility might answer our needs, but we love Nicholas and could not think of having him any place other than with us. With the assistance of our educational system, we were able to balance his needs, our careers, and a life for our family.
There were several occasions during Nicholas’ early years that gave me strength. I remember vividly the day he was trying to sit up all by himself. He was two and a half years old. He worked and worked and after two hours, he finally made it. He was out of breath, but the biggest smile of accomplishment came over his face. He knew what he had just done was BIG. I was crying tears of joy. One would have thought he had just won a gold medal. He certainly deserved one for his perseverance on that day. The significance of that event was that it gave us hope – you see – the general rule is that if a child can sit by age two, the more likely the chance he will walk.
Mr. Speaker, members of the House, imagine if you will, trying to teach your child how to play a simple game of patty cake. Over and over again every day for five years. You think it is hopeless — that he will never learn such a simple task — And then one day, out of the blue, he patty cakes back and all of a sudden you realize your efforts were not in vain. You realize that as long as your child is giving 150% —you cannot ever give up.
Just as any parent, I wanted the best for my child and worked hard to make it happen. Fortunately, we were not alone and sought support through the schools, the medical professionals, and the community. Every activity, every mobility that any of us take for granted must be provided as assistance for Nicholas.
Every activity, regardless of what it is, takes longer and significant planning. Due to a seizure disorder, Nicholas can never be left alone. And in order to have some time for my husband, our other three children, and our careers, we needed qualified care providers to cover after school care. It wasn’t easy finding care givers and when we did, it was always at a premium cost.
Suddenly one day, the the time came that my husband and I both had feared. Nicholas grew up. He was twice my size and I could no longer lift him and tend to his needs. My husband was diagnosed with heart problems and had to undergo quadruple by-pass surgery. It was time to find a place for Nicholas – a place where he would be safe and secure and where his needs would be met.
Fortunately for us as a family, we were able to receive a Waiver slot for Nicholas, which changed his life and ours in many ways. For the first time in 24 years, I could go to the store and pick up a carton of milk without having to worry about who was home to be with Nicholas. But the biggest relief was that the transition for Nicholas would be over time and not an emergency placement. This is not the case for many families who often wait decades to find the peace of mind that their loved one will be taken care of. Today, Mr. Speaker, I understand there are over 4800 people waiting for waivers. That number grows every month. We can do better — we must do better.
I still have dreams for Nicholas. I want the comfort of knowing that, if something happens to his father or to me, he will be secure in his living arrangement. My husband and I want to keep our jobs as tax-paying citizens, secure in the knowledge that Nicholas’ day program provides activity for him in a safe environment and he has safe transportation.
Wouldn’t each of you want these same things for your children? To be happy and productive in school, to play with other children, to develop obvious or hidden talents, and to be proud of their achievements.
I have already shared a few of Nicholas’ achievements, but I would like you to know that against all odds, Nicholas did learn to walk at age five, to feed himself, and to assist with self-help skills such as bathing, washing his hair, shaving, and brushing his teeth. And I am very proud of these achievements because these small accomplishments enabled him to stay at home with his family for many years.
But his greatest accomplishments, for which he will never know are:
• Teaching me patience
• Teaching me to love, unconditionally
• Teaching me to understand the importance of stopping and smelling the roses on my life’s journey
• Giving me the courage to be his voice — to fight his battles, and to fight for what is right
• In sum, suffice it to say that for a child who has never spoken a single word, he has taught me more than any professor or other person ever will. He is truly the wind beneath my wings.
For these gifts, I am thankful to my son.
When I was appointed to the Hampton-Newport News CSB Board of Directors, I welcomed the chance that I would have as a citizen to help improve the lives of individuals with disabilities, many of whom I now represent. As a former board member and as a parent, I have witnessed and experienced the excellence that the CSB brings to the community and to its citizens, particularly those with disabilities.
As a legislator, I am gratified that the House crafted some relief from the action in the Introduced Budget and proposes to lift the waiver freeze. Some of the dire actions remain in the budget and it is critical to remember that when services are reduced or eliminated, not only the individual with the disability is affected but the entire family. That family could be your family, your neighbors, your friends, or, in the future, perhaps even one of you.
Mr. Speaker — I know for a fact that Members of this Chamber have sought and received services from your local Community Services Board for your constituents in need of Waiver services. The challenges that my family has faced are not unique to us, but are shared by many of your friends and associates.
Virginia’s Medicaid Waiver public policy strategy was created almost 20 years ago as a compassionate and equally important, fiscally conservative alternative to costly institutional care. We need to sustain this important public policy safety net known by all of us as the “Waiver slot” system of care.
My hope is that no family member will be forced to choose between a job and taking care of a family member because services are reduced.
My hope is that parents don’t have to pray that the good Lord takes their child before them so they have peace in knowing that their child will not suffer in their absence.
My biggest hope is that no one has to wait decades to receive a waiver.
Mr. Speaker — I was disturbed to learn this week that a member of this body believes that disabled children are somehow punishment or deserved by the parents. I hope this view is not shared by other members of this Chamber. More important than words or rhetoric are the actions we take.
As a result of the economy, my family, like so many others, will be called upon to provide more continued support for my son than before.
Let us intend that the action we take in this Chamber this week on our budget is only temporary —- and that we can and will build back services that are so desperately needed by the most vulnerable of our citizens.
More importantly — Let us not betray the trust that Virginia families have placed in us. Above all, let’s keep our promises to them as soon as we can.
Thank you, Mr.Speaker and members of the House for this opportunity to share my story with you today.