In late March, an eloquent letter from a mother was circulated throughout family support and advocacy circles. This mother spoke from the heart about the frustrations of advocating for years for her child, telling her story and the story of her family repeatedly, and laying her heart and pride on the line. The anger in her letter stemmed from the threat of new program cuts despite the amazing efforts of this mother and many like her. This letter resonated with many parents of children with special needs.
In the past twenty years, great strides have been made in the lives of our children. Greater independence, better programs and supports, better educational opportunities. Yet, having fought for years to make their children's lives better, parents are now seeing those improvements threatened with cutbacks, rollbacks and eliminations in services and supports. Developmental Services has taken hits for many years with more coming, Medicaid premiums have seen increases and now Medicaid faces very uncertain times. Many parents are left asking how many times must we tell our stories, laying bare our lives and our pride, in order to get our children those supports that will help them achieve their full potential?
We are facing rocky times as a community and state. For those parents who can and want to share their stories, it can make a difference. Many parents, however, do not feel in a postion to be advocates at the state or national level. They have their hands full getting their children ready for school, attending medical appointments, advocating at IEP meetings, and finding childcare that fits their children's unique needs. Sometimes just being mom or dad is all we want to be.
For those families, that is where Parent to Parent of Vermont hopes to come in. If you are feeling alone in your situation, call us. We can listen, we can help brainstorm solutions, and we can help connect you with other parents experiencing similar issues. If you feel comfortable, let us tell your story. We participate in the public process and strive to represent those who cannot be present or who cannot advocate for themselves.
Wherever you are in the journey of being a parent of a child with a special need, you are not traveling alone. You may feel isolated at times, the road may twist and wind, but other parents also travel that road. Let's join to walk that road together and, in the words of Margaret Mead, "never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." 
  

Nancy Osborne is doing something  "I always pick up pennies," Nancy Osborne says, "and some day those pennies are going to turn into a chunk of change!" Given the current fiscal crises facing our state and nation, Nancy feels like there couldn't be a better time to start applying those same principles to Medicaid. That's why Nancy is doing "Where's the Waste" (see right). Perhaps a better question to ask is how Nancy is doing it. Caring for a 19-year-old son with severe athetoid cerebral palsy, Nancy is a combination single mom, case manager and nurse. She has waged incredible battles over the years, and, like many parents, has sometimes found herself wondering if she could even get through the day. Nancy is the first to admit that fifteen years ago, five years ago, even last year she couldn't imagine she would ever be in a position to tackle something like waste in Medicaid. Lack of adequate help and the challenges of providing for her family left her with simply nothing else to give. Now, though, her situation has changed such that she finds herself able to turn her advocacy skills - honed over years of fighting for care and services for her child - to some of the larger issues affecting Vermont families. "I've realized over the years that I've advocated a lot, but it wasn't always in the right places." So, last year Nancy joined the Vermont Medicaid Advisory Board. There, she joins other parents and consumers of Medicaid services, healthcare providers and representatives from various organizations to review proposed policy changes to the Medicaid program and provide advice to the state's Office of Vermont Health Access, the agency in charge of Medicaid. But for Nancy, the Medicaid Advisory Board isn't enough. She's searching for other creative ways to help fix the problems she sees with efforts like "Where's the Waste." And that's not the only one. Nancy confesses that there are many different issues she's mulling over, just looking for the right opportunity and the right moment to engage. "I've been broken," Nancy says, remembering the days when it was just too much and all she could do was cry. "But I've refused to be ultimately broken." And so she keeps telling her story and looking for ways to make a difference.

"Where's the Waste?"      "Where's the Waste" is Nancy Osborne's brainstorm about how families can help legislators strengthen the Medicaid program by addressing its inefficiencies.      We all know how important Medicaid is to the care of children with special health needs. Many of our children rely on traditional Medicaid, Dr. Dynasaur, or the Katie Beckett Waiver for our kids to access personal care services, medically necessary therapies, or just basic preventive healthcare.      Over the years, Nancy has witnessed first-hand some of the inefficiencies that plague Medicaid. Probably most parents whose children have Medicaid have seen examples of waste in their own children's care. Medicaid is facing a crisis in funding and frugal Vermont consumers want the red tape that causes this waste to be eliminated.      Tell Nancy where you see the waste! In an effort to help legislators make constructive changes to Medicaid, she is gathering examples of waste that families perceive in the system. Do you feel that Medicaid dollars are being spent on care or equipment that isn't helpful for your family? Are there better ways to apply those dollars in your case?      If you have a moment, please tell Parent to Parent your example. Nothing formal or lengthy, just quick anecdotes showing how the system could be improved for your family. Back to Top

One Voice Can Make a Difference! In July of 1998, a beautiful baby girl was born into the family of Jim and Carolyn Austin in northwest Vermont. Tannis has a loving family, is vibrant and happy, and has metachromatic leukodystrophy, a rare disorder. Tannis received services through the Family, Infant and Toddler (FIT) program until her third birthday, at which point all children transition out of FIT. Jim and Carolyn personally know how important this early intervention program is to their family and others whose children have developmental needs, and so have become important advocates for FIT. Jim took to advocacy like a fish to water. He was asked to join the Vermont Interagency Coordinating Council, the parent-led council for the statewide FIT program. This role took him to Florida for a Family Leadership Conference last spring and to the Vermont Statehouse in Montpelier to advocate for the FIT program when it was threatened with significant budget cuts. Along with other families who benefited from FIT, Jim and Tannis met with legislators and Governor Douglas and laid out their argument that early intervention works, it saves lives, and it saves money. Jim said he found the legislators to be very open to hearing from families and the visits were comfortable and relaxed as the families shared their stories. "The meetings were really important. The legislators told us how helpful it is to hear from parents because it gives them first-hand information on the parents' experiences in the community," Jim related. "And they really need that information in Montpelier!" Due to families' hard work, FIT was restored to full funding last year.  Jim continues to be active in the VICC and other leadership roles in his community. In addition, Jim finds time to work full-time, support other parents whose children have special health needs, educate medical students, and participate in community activities. And, of course, be Tannis' dad.

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