Monday, October 27, 2008

A New IDEA

David and me looking over one of the three rivers
This weekend our family plans were rained out. We had planned on an outdoor family day before the weather turns too cold. Rain was to come as of Friday, so we thought it might be a bit wet, but had not planned on downpours. So we stayed in and I made cold weather food—baked potato soup and pulled pork sandwiches.

Saturday David woke up in the wee hours of the morning (like 3am) and was up for many hours. We all finally got a few more hours of sleep but it was almost 9:30 before David finally rolled out of bed.

Old train station entrance (next to our hotel)
So as Rich and I tried to be quiet, he turned on FOXNews. They began to cover a speech that Sarah Palin was making in Pittsburg about special needs children. I listened with great interest since this is a topic close to my heart. I felt that since her son had not hit the school issues her understanding of special needs parenting would be limited. However, after listening to her speech I think she has surrounded herself with many others, including her sister, who have been able to express the issues that arise from parenting these children.

One of the points she made in her speech is the need for the federal IDEA funding to follow the child, no matter where they move to. We found this to be a major consideration in our family. We actually receive less services in our new home then we did in our old home. And of the services David is receiving, we have fought hard to get every one of them.

Nighttime view of the skyline
taken from the Dusquesne Incline
In our last community the services were readily offered before we needed to ask for them. Many would then wonder why we would move. After coming to the new community we maintained two houses to determine which area would be best for our family. While the old school system had great services for our son that was where the benefits ended. The mental health care was not sufficient for children and the city environment caused David to become more aggressive. We also had less of a support system.

There was nothing we could do about the health care or aggressive environment of living in Northern Virginia. But I knew we had a better chance of fighting a school system to get David services.

We are very glad for our decision since David is growing and accomplishing more then anyone ever thought he would. If David's funding had followed him we could be receiving more services then he currently receives.

David and me at a pizza restaurant
Sarah Palin also addressed the additional concern for long term needs of these children. While all parents have concerns for their children, there is often the concern for lifetime care and services that special needs children may require. We as David's parents are training him in the skills that can help him hold down a job, provide for his needs and sustain a relationship. But we are also preparing for the eventuality that he may always be under our care. However, we have been told by many "professionals" that this is a hope that is unlikely to occur. One doctor even told us, after an eight hour comprehensive testing session, that children with David's issues were either dead or in jail by the time they were twenty. I told this man to never call again, since I refused to just accept his diagnosis.

It was funny that Gov. Palin's speech happened to be in Pittsburg. Several years ago I attended adoption workshops in Pittsburg and was even able to bring my family for this workweek-long event. This past week as I was purging boxes I found the pictures of that week.

I have included Gov. Palin's speech in its entirety below.


Palin's Speech on Children with Special Needs
By Sarah Palin, Pittsburgh, Pennsylvania

"Thank you all very much. I appreciate the hospitality of the people of Pittsburgh, and I'm grateful to all the groups who have joined us here today. The Woodlands Foundation, the Down Syndrome Center at the Children's Hospital of Pittsburgh, Autism-link, the Children's Institute of Pittsburgh: Thank you for coming today. And, above all, thank you for the great work you do for the light and love you bring into so many lives.

John McCain and I have talked about the missions he'd like me to focus on should I become vice president, and our nation's energy independence and government reform are among them. But there is another mission that's especially close to my heart, and that is to help families of children with special needs. And today, we'll talk about three policy proposals that are going to help us fulfill our country's commitment to these children: more choices for parents, fully funding IDEA, and efforts to reform and refocus.

Too often, even in our own day, children with special needs have been set apart and excluded. Too often, state and federal laws add to their challenges, instead of removing barriers and opening new paths of opportunity. Too often, they are made to feel that there is no place for them in the life of our country, that they don't count or have nothing to contribute. This attitude is a grave disservice to these beautiful children, to their families, and to our country -- and I will work to change it.

One of the most wonderful experiences in this campaign has been to see all the families of children with special needs who come out to rallies and events just like this. We have a bond there. We know that children with special needs inspire a special love. You bring your sons and daughters with you, because you are proud of them, as I am of my son.

My little fella sleeps during most of these rallies, even when they get pretty rowdy. He would be amazed to know how many folks come out to see him instead of me.

When I learned that Trig would have special needs, honestly, I had to prepare my heart. At first I was scared, and Todd and I had to ask for strength and understanding. I did a lot of praying for that understanding, and strength, and to see purpose.

And what's been confirmed in me is every child has something to contribute to the world, if we give them that chance. You know that there are the world's standards of perfection, and then there are God's, and these are the final measure. Every child is beautiful before God, and dear to Him for their own sake. And the truest measure of any society is how it treats those who are most vulnerable.

As for our baby boy, Trig, for Todd and me he is only more precious because he is vulnerable. In some ways, I think we stand to learn more from him than he does from us. When we hold Trig and care for him, we don't feel scared anymore. We feel blessed.

Of course, many other families are much further along a similar path -- including my best friend who happens to be my sister, Heather, and her 13-year old son Karcher, who has autism. Heather and I have worked on this for over a decade. Heather is an advocate for children with autism in Alaska. And as governor, I've succeeded in securing additional funding and assistance for students with special needs. By 2011, I will have tripled the funding available to these students.

Heather and I have been blessed with a large, strong family network. Our family helps make sure that Trig and Karcher have what they need. But not everyone is lucky enough to have that strong network of support. And the experiences of those millions of Americans point the way to better policy in the care of children with special needs.

One of the most common experiences is the struggle of parents to find the best and earliest care for their children. The law requires our public schools to serve children with special needs, but often the results fall far short of the service they need. Even worse, parents are left with no other options, except for the few families that can afford private instruction or therapy.

Many of you parents here have been through the drill: You sit down with teachers and counselors to work out the IEP—an individual education plan for your child. The school may be trying its best, but they're overstretched. They may keep telling you that your child is "progressing well," and no extra services are required. They keep telling you that—but you know better.

You know that your children are not getting all of the help they need, at a time when they need it most. The parents of children with special needs ask themselves every day if they are doing enough, if they are doing right by their sons and daughters. And when our public school system fails to render help and equal opportunity—and even prevents parents from seeking it elsewhere that is unacceptable.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents'. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice—public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida's McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective -- because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs.

That's why John and I will direct the Department of Education to clarify the statute administratively. We'll make explicit that when state funds are portable, federal funds are fully portable. We're going to make sure parents have choices and children receive the education they deserve.

Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

In a McCain-Palin administration, we will also fully fund the Individuals with Disabilities Education Act. To his great credit, it was President Gerald Ford who signed the legislation that became the IDEA—establishing new standards of respect and inclusion for young Americans with disabilities. From that day to this, however, the federal government's obligations under the IDEA have not been adequately met. And portions of IDEA funding have actually decreased since 2005.

This is a matter of how we prioritize the money that we spend. We've got a three trillion dollar budget, and Congress spends some 18 billion dollars a year on earmarks for political pet projects. That's more than the shortfall to fully fund the IDEA. And where does a lot of that earmark money end up? It goes to projects having little or nothing to do with the public good -- things like fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark. In our administration, we're going to reform and refocus. We're going to get our federal priorities straight, and fulfill our country's commitment to give every child opportunity and hope in life.

For many parents of children with disabilities, the most valuable thing of all is information. Early identification of a cognitive or other disorder, especially autism, can make a life-changing difference. That's why we're going to strengthen NIH. We're going to work on long-term cures, and in the short-term, we're going to work on giving these families better information.

Once a condition is known, parents need the best and latest information on what to expect and how to respond. This service is also provided for under the IDEA. And we will make sure that every family has a place to go for support and medical guidance. The existing programs and community centers focus on school-age children -- overlooking the need for assistance before school-age.

But it would make a lot more sense for these centers to focus as well on infants and toddlers. This is not only a critical stage for diagnosis; it can also be a crucial time to prepare the family for all that may lie ahead. Families need to know what treatments are most effective, and where they are available, what costs they will face, and where aid can be found, and where they can turn for the advice and support of others in their situation. As Todd and I and Heather know, there's no substitute for the friendship of those who have been where we are now.

The IDEA is also intended to serve teens and young adults with special needs. And here, too, there is an opportunity to reform and extend the reach of federal support under the IDEA. By modernizing a current law, the Vocational Rehabilitation Act, we can better serve students with disabilities in our high schools and community colleges. This will require reform by the states as well. Just as the federal government expects proven results in the progress of other students, we must require results as well in the achievements of students with disabilities. And the result we will expect is simple: that every special-needs student be given a chance to learn the skills to work, and enjoy the freedom to live independently if that is their choice.

As families across America know, the care of special-needs children requires long-term planning, and especially financial planning. A common practice among these families is to establish financial trusts. These are known as special needs trusts, covering years of medical and other costs, and for parents they bring invaluable comfort.

Understandably, then, many families with special-needs children or dependent adults are concerned that our opponent in this election plans to raise taxes on precisely those kinds of financial arrangements. They fear that Senator Obama's tax increase will have serious and harmful consequences—and they are right. The burden that his plan would impose upon these families is just one more example of how many plans can be disrupted, how many futures can be placed at risk, and how many people can suffer when the power to tax is misused.

Our opponent has an ideological commitment to higher taxes. And though he makes adjustments on his tax plan pronouncements seemingly by the day, his commitment to increase taxes remains the same. John McCain and I have just the opposite commitment. We intend to lower taxes, promote growth, and protect the earnings and savings of American families.

Not long ago, I spent some time at a place in Cleveland called the Michael T. George Center, a beautiful home for adults with Down Syndrome and other disabilities. I met Michael George, too, a boy of five with Down Syndrome. Michael is a healthy, sweet, joy-filled little man—and I saw in him all the things I wish for Trig in just a few years.

Michael's parents, Tony and Kris George, are advocates for children with special needs in their community. They are thinking far ahead, in their own boy's life and in the lives of others. They named the center after their son. It's a public-private partnership. This welcoming place—and so many others like it—shows the good heart of America. They are places of hope. They are the works of people who believe that every life matters, everyone has something to contribute, and every child should have things to look forward to, and achievements to point to with pride and joy. As many of you know better than I, it can be a hard path, and yet all the more joyful and productive when the barriers are overcome.

John McCain and I have a vision in which every child is loved and cherished, and that is the spirit I want to bring to Washington. To the families and caregivers of special-needs children all across this country, I do have a message: For years, you sought to make America a more welcoming place for your sons and daughters. And I pledge to you that if we are elected, you will have a friend and advocate in the White House.

Thank you all, and God bless you."

Sarah Palin, the Governor of Alaska, is the Republican vice presidential nominee.

2 comments:

simplegifts3 said...

Thanks for posting this.

Kim said...

Dear Simplegifts3- I felt this speech really needed to get out. I also knew that the main stream media would not be likely to report it.
Your very welcome.