Autism Society’s Day On The Hill Part 2: Advocating for our kids Thursday, Feb 25 2010 

From Raymond

Advocating is a little like conducting a symphony. You have it all scripted in your head, but getting everyone to play the right thing at the right time is tough.

We didn’t have that problem today. We nailed it.

First off, our advocacy team consisted of a director of special ed, the head of an Autism Society chapter, a member of the military whose son is affected, an adult with autism and me. Diverse and knowledgeable, which is formidable on the hill. We couldn’t get meetings with our senators, so we spoke to their assistants instead. Naturally the hill was buzzing. There was the bipartisan health care meeting and the Toyota folks running about. In addition there was the usual crush of lobbyists and advocates, salesemen and citizens.

Our initial meeting was with Senator Webb’s assistant, who was somewhat cold until our military expert chimed in. Then she warmed up to the subject a little, and our adult with autism told her story. She started with her diagnosis at a young age and then recounted the steps to get to her current life, living on her own with a job and a car. She is a real inspiration to me, and I could see that powerful message of hope resonated with the delegate. The head of special ed said her piece, and the fearless leader of an autism org took it home. He also volunteered to do research for the legislative assistant, and get testimonials or any other info into her hands if the Senator needed it. It worked pretty well, but his aide said that Senator Webb is very careful about bills he cosponsors, so they would really need to think about it before committing. We gave her our info packet and headed out.

This turned out to be a pretty good format for us, so we decided to use it for the next meeting. Senator Warner’s assistant was positively vivacious. She was knowledgeable and really gave some consideration to the subject. She liked the acts, and really appreciated the fact that the ABLE act and the Restraints And Seclusions Act were fairly revenue neutral. We feel like we really made an impact, and our follow up with her will hopefully yield some positive results.

Lunch break, then I was on my own. I bid my companions farewell and went to visit Congressman Wittman. I like Rob Wittman, as he is from the northern neck and a local guy. He really warmed to our story, and asked to keep Raymond’s picture. Naturally I let him! I also volunteered my assistance in answering questions on the disorder, resources or anything they needed. I felt really good about this one, and I think they really listened and understood our issues and how these bills will help our kids, adults, families and communities. He also mentioned a young man that attended his alma mater, Benedictine, who was riding a bicycle cross country to raise awareness for autism! His name is Ronald Barnes Jr. and you can visit the Autism Society’s site for him. The synchronicity is that he was in the office just moments before I walked in! I’m taking that as a good sign.

I visited one other office and dropped of an information packet. Then I was done for the day, but I’m following up. I want them to know me, and know our kids. I want our representatives to know we are watching, and we care what they do. I will put out the word next time I come up here, because I want more people to come with me. This helps restore your faith in the process, but we need people to make it work. Keep up with the legislation at the Autism Society’s Legislation Page.


Autism Society’s Day On The Hill 2010 Part 1: A Crash Course In Advocacy Wednesday, Feb 24 2010 

If it seems like most of my posts are about advocacy recently you are absolutely right. I’ve been doing a lot of advocacy because now is the time to do it. The Virginia General Assembly only meets for a couple months, and it seems like the Autism Society is front loading our 2010 federal advocacy opportunities. It works for me, because I love talking to people about my son. Today’s session was a marathon training session on how to advocate in Congress.

I’m going to condense what I learned into a few simple sentences. There is a lot more, but what I view as the three keys are as follows. Shake hands, introduce yourself, tell folks where you are from, tell your story, ask your congressman to do what you want and follow up later.

Boom. You’re ready to get a job as a lobbyist.

Maybe not quite yet. The bills we are working on are below with links to the AS pages that summarize them. Please take a minute to click and read them. They all make good common sense.

ATAA – The Autism Treatment Acceleration Act – “To improve the quality of life for individuals with autism spectrum disorder and their families, the ‘Autism Treatment Acceleration Act’ was introduced authorizing federal funding for services, treatment, support and research on autism spectrum disorders.” Senate Bill 819 / House Bill 2413

ABLE – Achieving a Better Life Experience Act – The federal government gives families a helpin hand saving for the future. Senate Bill 493 / House Bill 1205

Preventing Harmful Restraint and Seclusion in Schools Act – This one really speaks for itself. Let’s make this one happen. Senate Bill 493/House Bill 1205.

ToSCA – Toxic Substance Control Act Reform Platform – This one is key, and will be introduced soon. This would require the removal of severely toxic substances and better labeling of other controlled toxic substances. This is a big deal for kids and adults on the spectrum, and humanity in general.

You can always check on these bills and get tons of great information at the Autism Society’s Federal Legislation Page. You can take action right there. Its really a great resource.

We were taught by a number of different speakers who I want to thank here. First off, thanks to Jeff Sell for being the confident and down home emcee. Thanks to Lee Grossman, president of the Autism Society. Thanks Cathy Pratt for your stories and your compassion. Thank you Serena Lowe for your insight and passion. Thanks Dara Baldwin for your perspective and your strength. Thank you to Steve Beck for your work and dedication. Thanks Donna Ferullo for your detailed analysis and intelligent presentation. Thank you Lindsay Dahl for your solid facts and lobbying advice. Thanks Caryn Yavorcik for your media knowledge and PR wizardry. Thanks Chris Kush for your insider knowlege and smart approach. Finally, thanks to the Autism Society staff as a whole for putting this together and helping us help our loved ones, most especially Hannah Cary.

Next segment will come friday as I’m sure I’ll be too exhausted to post tomorrow night. Any support you can give in the form of calls or emails will be appreciated. Make a difference and help take back our government.

An open letter to Governor McDonnell about cutting the EDCD waiver. Friday, Feb 19 2010 

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.

Hello again, or why I’ve been afk! Tuesday, Feb 2 2010 

Alright, howdy all! Sorry its been awhile, but I have been super busy the last 3 months or so. First off, upon changing our son’s school, which was an ugly process, we became involved in our new school. The new school, Courtland Elementary, is an absolute delight. They have the oldest autism program in Spotsylvania county and really focus on inclusion. The staff and teachers are wonderful, and even the other parents volunteer and work hard to make sure the school is successful.

Also, our local autism community is growing and developing a voice! If you are in Virginia and have not heard of Commonwealth Autism Service then you should check them out. They set up Autism Action Groups all over the state, and we have been developing one for the Fredericksburg Area. It is called the Fredericksburg Region Autism Action Group, or FRAAG for short. We are developing a resource list that I will share on here as soon as we have it hosted.

That leads to my next announcement. Due to my involvement with FRAAG, I was asked to attend an Autism Society of Northern Virginia meeting. I am now on the board of ASNV! They are a great organization and have expanded the service area to include Stafford and Fredericksburg. Hopefully Spotsylvania will follow soon. We are in the process of adding it, but bylaws changes take a while.

We have also had several play groups and think tanks. Our local play group/think tank core is 24 families. All in all 2009 was a good year for me, and I hope for even more in 2010. If you want to get on my email list then send me a message. I love to get people in the loop and aware of what is there for their families.

Little tips that work for us Tuesday, Feb 2 2010 

I know its been a while, but I finally have a few minutes to throw some knowledge down. I’ll post an update of what I’ve been up to shortly, but I have a few things on my mind I want to share while they are fresh. Number format so I don’t lose track.

1. Break it into pieces. If the pieces are too big, break the pieces into smaller pieces until you can manage them.

What I mean is that autism is overwhelming. There is so much to learn, so much to do, that you have to make it manageable somehow. My wife and I divide things, and set tasks. When she researches something, I take her word on it, and vice versa. That leads to my second point.

2. If your partner is on board, trust them.

When I say partner, I mean partner in autism. I know a lot of folks are in this alone, and my heart goes out to you. This is hard with two people. I can’t imagine doing it alone. Still, if it is you and your spouse, your dad, your mom, your aunt, or whoever, trust them. Our instinct as parents is to be protective, but at some point we have to let someone else in. When I finally started trusting my wife’s opinion and statements, we became more than the sum of our parts. I hope you have someone you can allow that to happen with. (Great sentence, ey?)

3. Write, call and email your elected officials

If you can find time, get our kids on the radar. Make a big deal. Hand write a letter, or have your child who is affected write a letter or draw a picture. If you put these people on the spot and make them see our kids then they will either respond or be shown as an uncaring cretin. Remember who we are working to help!

4. Schedule one on one time with your child

I am a busy guy, and I think I can do it all. My problem is I like to work, and I love to help. Unfortunately, that means I often overschedule myself. In order to help maintain my priorities, I now schedule time with my son. I know he would want me to help other kids like him, but not at the expense of his time with daddy. What helps our kids the most, and invests them in our world the most is our presence, our care, our love. Take time to express it.

That’s it for now. Keep up the great work!

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