Spokes Rule!

We traveled to Smithfield, North Carolina this past weekend for Ronnie's wheelchair basketball tournament. The weather was beautiful. The traffic was light. And the Sportable Spokes (Ronnie's team) won two out of their three games!!








Way to go, Spokes!!!

The Glorious Winds of Change!

History was made in my home state of Virginia yesterday - history that will improve the lives of people with disabilities. Virginia has been ranked 47th out of 50 states in service to people with disabilities. The US Department of Justice believed change was needed and sued the state. A settlement agreement was reached and it marks the beginning a real, substantive change. A huge, huge thank you to all the advocates who made this all possible!



You can find the story all over the national press, but this from CNN sums it up very well:

Washington (CNN) -- In a closely watched case with implications for other states, Virginia reached a broad settlement with the Justice Department Thursday on protecting the legal rights of people with developmental disabilities, both physical and intellectual. The agreement also will resolve violations of the Americans with Disabilities Act.

Virginia agreed to provide an estimated 5,000 citizens with community services that will allow them to live in community-based settings, including family homes, rather than being institutionalized.

The Justice Department's Civil Rights Division is pressing states to comply with a Supreme Court ruling that says the developmentally disabled have a right to receive services in the most integrated settings appropriate to their needs.

Justice officials say the case is particularly relevant to ongoing investigations in Oregon, Florida and Utah. In addition, the Justice Department has issued its findings but not yet reached agreement with officials in New Hampshire, North Carolina and Mississippi.

The Justice Department has reached agreements previously with Georgia and Delaware.

Virginia has allocated $60 million to help integrate the individuals covered, and the federal government will match that with Medicaid waivers, according to Assistant Attorney General Thomas Perez, who announced the settlement.

Perez, an Obama administration appointee, praised Republican Gov. Bob McDonnell and other GOP leaders in Virginia for their cooperation in reaching the agreement. Perez says he is confident the agreement to minimize the institutionalization of individuals will save Virginia money in the long run.

The settlement follows a federal investigation of Virginia's system that found the commonwealth had ADA violations.

And this from Assistant US Attorney General Tomas Perez:

Virginia is a state with strong and committed advocates who have long been pushing for improvement of the Commonwealth’s developmental disabilities system. Throughout our investigation, we met with stakeholders across the Commonwealth, to learn about what is and is not working for people with developmental disabilities. We heard their problems and concer...ns, and ideas for addressing them, as well as their successes. We heard from families who are barely hanging on while their loved ones sit on long waitlists for community services and from self-advocates wanting more opportunities to work and live independently. We heard from the families of persons now living in institutional settings who worry whether the needs of their loved ones can be met in community settings. We also met with some individuals, including some with complex needs, who are being successfully served in the community. Our agreement draws on the input from these critical stakeholders about how to best meet the needs of all Virginians with developmental disabilities. Continued collaboration with and input from these stakeholders will be a critical part of the implementation of the agreement.

Hello, My Name Is....

An incredible Dad that I know through Facebook published a picture yesterday of a business card he ordered for his severely disabled daughter. Here it is:



We've all dealt with the stares from people who don't understand or are curious about our children with significant needs. According to this dad, Roy:

"The card does two things. There's an icebreaker to remove that awkward feeling when people first meet a disabled person and an easy and private way to learn all they want to know. The website also gives them several ways to stay in touch."

And he provides an example from something he personally experienced:

"At the grocery store there were two young girls who were quite curious about Emma. The mother, however, was embarrassed by her daughters and tried to quiet them. I gave them the card and that's all it took for mom to get on board too."

What do you think of this idea? I'm liking it...a lot. Do you think it might help educate and raise awareness? Would you be comfortable handing out such a card to strangers?

Special Exposure Wednesday

Cooper is growing at an alarming rate! He has gained an average of 2.5 pounds a week since we brought him home on Christmas Eve. Today he is 12 weeks old!



Here he is the day he joined our family!

Not A Skill Set I Want

Being the parent of a child with special needs, especially when some of those needs are medical and life threatening, is a difficult job. There is absolutely no doubt that we need help sometimes. We need nursing care for our children – we need specialists like neurologists, gastroenterologists, therapists, and such – we need for our friends to sometimes help ease the burden by bringing us a meal, helping with our other children, or even just being available to lend an ear. But ultimately, the care of our special needs children, as long as they reside in our homes, falls to the parent(s). We have to learn to cope for those times when we don’t have help. We have to know how to survive the long sleepless nights, the lack of time to shower, and how to care for everyone else in the family. And 99.9 percents of the parents of special needs children that I know (and that’s a whole lot) do know how to survive, how to cope when support systems fail. But recently I have met a parent who chooses not to cope without support.

This particular parent is married and has two children – one with special medical needs and one without. This parent has a LOT of support – nurses, grandparents, friends. Neither parent works, yet they live in a nice brick home with a large yard. They are currently working with a contractor to add on to the house. The mother regularly has her hair colored by a professional and has manicures and pedicures very frequently. She has an active social life that doesn’t include her children, and shopping is one of her favorite pastimes. They never lack for food, furniture, or entertainment options.

How does this particular family make all this happen? Primarily through the power of Facebook.

Each day brings a ‘request for prayers’ for a particular need. This morning’s prayer request involved hoping Mom can make it through the day without the nurse who happened to call out sick. Sometimes it’s comments like, “haven’t been shopping in 3 days – going through withdrawal” or “my nails look so bad that I just don’t want to leave the house”. Those comments usually draw someone to meet the need.

Your initial thought might be that I am jealous of this mom. You would be totally wrong. I also lack for very little but it is because I ensure my family’s needs are met. I’m not fond of always having people in my house, be they nurses, therapists or friends who visit unannounced. It’s just not in my nature to ask, ask, ask of others. I am the giver not the taker. And it has never once occurred to me in my life that I had a right to rely on other people to make my life what I want it to be. So no, I am not jealous.

What I am is embarrassed. I can understand when people of a certain political party don’t feel Medicaid and other such programs are necessary if they happen to meet or know this family that I just described. I can understand when politicians say we should rely on friends and our church to help meet our needs and therefore don’t need social programs to help us. Thing is, what this particular family has honed to a fine art is not the norm, is not even close to the norm.

This mom has a skill set that I do not wish to have. I seldom talk about religion, my beliefs or my faith on this blog. But today I am making an exception. Long ago, when I first became an adult and then later a mother, I chose a particular passage of the Bible as my guiding light. It is Proverbs, Chapter 31, verses 10-31.

Look it up and you will understand why the actions of this family and this mother bother me so much.

Falsely Accused?

I believe one of the biggest fears of parents of children with disabilities is being falsely accused of child abuse or sexual abuse of your child. This is an even bigger worry for parents of children who are non-verbal, or single parents raising children of the opposite sex.

Check out this story posted by Roy Ellis, a father to 11 children - A Dad's Nightmare Over False Sexual Abuse Charges.

I, too, have been accused of child abuse. My now 21 year old daughter honed the art of false accusations. Jessica was (and still is to a degree) a child who would erupt in outbursts of rage and aggression. Although she did frequently and seriously hurt others (she broke two of my ribs during one of her rages), she would hurt herself also. Because of her hemiplegia she has limited use of her left side and during her rages, she would lose her balance and fall. Many times she would go to school or daycare and tell the staff that I was the one who hurt her.

The feeling of having child protective services show up at your door is beyond words. I was fortunate because I had a large support group who could speak to what really happened, and most importantly, child protective services believed my support group and me. But many many parents are not believed.

What about you? Have you had this experience? Has someone put words into the mouth of your child, or witnessed something they didn't understand? Have you been accused and had to defend yourself? How have you survived this?

International Day of Acceptance

Today is the INTERNATIONAL DAY OF ACCEPTANCE - January 20, 2012

Just what is the International Day of Acceptance? It is a day to achieve social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

3E Love is a social entrepreneurial awareness experiment.

Join the movement at
http://www.dayofacceptance.com

Wear your heart on your sleeve on January 20th.

Tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters: Join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else - you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let's join together to:
Embrace diversity. Educate your community. Empower each other. Love life.



Start the conversation of acceptance on January 20th with the International Symbol of Acceptance: Wear a t-shirt. A sweater. A hoodie. Use a bag. Pin a button to your jacket, chair strap or backpack. Ink a temporary tattoo onto your hand. Draw it on if you have to! Ask your friends to join us as well. And for a final touch change your profile picture on Facebook to the symbol. Get people talking!

When a person asks about the symbol, "What's that mean?" Well now it's your turn to tell them your story or what its significance is to you.

And maybe next time they will look at the antiquated traditional symbol a little differently......

Join the movement at
http://www.dayofacceptance.com