5 Minute tour of Provincetown, MA using a GoPro camera attached to the foot rest of Eric’s Wheelchair.
People First Campaign: A Day of Action
Tomorrow, Tuesday, October 20, 2009 the Arc of Massachusetts and a number of other statewide disability advocacy groups will participate in a virtual protest against further budget cuts to human services for our most vulnerable residents of the Commonwealth. More than ten thousand individuals with disabilities have already lost some or all essential services this budget year ($45 Million cut in the Department of Developmental Services in FY’2010). These cuts included employment, day programs, family supports, and transportation that are central to people’s lives. Many families are already struggling and in need of help. More cuts will push many families to the brink and could actually be life-threatening. If these cuts go through, it will mean the dismantling of the Safety Net for tens of thousands of people with disabilities statewide.
Why is it that when times are tough, services for people with disabilities shoulder a disproportionate burden of budget cuts? Advocates fight so hard for vital services, yet these services can be taken away in the blink of an eye. The Governor and legislature must know about the potential dangers of making any further cuts to human services. What does it say about our society when our most vulnerable citizens are left without vital services?
If you work in the human services field, if you know someone with a developmental disability (such as the Bissell boys), or if you simply care about our most vulnerable citizens, here are a few things you can do to help:
* Use this Action Center to send an email to the Governor and EOHHS Secretary Judy Ann Bigby.
* Make phone calls to the Governor (617-725-4005), your senator and your representative (you can find who they are and get contact info at the Action Center).
* Use this link to sign our Twitter petition and send a tweet to the Governor (@MassGovernor): http://act.ly/ov
* Share your concerns on the Governor’s Facebook Fan Page http://www.facebook.com/GovernorPatrick
* Contact your local newspaper and tell them that you are participating in the People First Campaign.
Press release template (Word Format)
More information and talking points (PDF Format)
Tell whoever you talk to that you are concerned about the harm already inflicted on services for individuals with intellectual and developmental disabilities and that further erosion of the Safety Net cannot be withstood. Thanks.
Public Option Please
My letter to Massachusetts Senator John Kerry:
Dear Senator Kerry,
I am an RN and mother of three sons who all have disabilities. I am also an advocate for children with complex health care needs and I network with parents of children from all over the US. Most of these children have tracheostomies, g-tubes and many are ventilator dependent and require 24/7 care.
I am so thankful to live in Massachusetts where we have easy access to quality health care and medicaid waivers for children with disabilities and complex medical needs. But many people in other states do not get the help they need in order to care for their children at home. In some states, children are put on a waiting list for many years in order to get the help they need right now. It is not fair that a child is denied assistance, just because they happen to live on the other side of a state line.
This is just one of many reasons why I support a public option and why I feel that this part of the bill must be included in order to have ‘real’ health care reform.
Thank you for all you do.
We’ve been trying to find a sled that will work for Eric in the wintertime. When he was little, there were lots of options, but now that he has grown, we haven’t been able to come up with anything. He needs a firm backrest and his feet need to be off the snow. I know of others who have used a dog sled, so I’ve been watching eBay for a good deal. These dog sleds are not cheap.
We were driving around one Sunday and saw a dog sled at the side of the road with a “FREE” sign on it. Great price, so we grabbed it! It was a rusty old thing made of steel with a wooden seat that was rotting. I took the sled apart, sanded it down and primed and painted it. The seat had to be replace with new wood. Here is a before and after photo.
The good news is that it came out nice; the bad news is that I don’t think this will work for Eric. This sled is made of steel and is very heavy. I can’t imagine being able to push this heavy thing with Eric in it (add 120 lbs), and I have no intention of getting dogs to pull it! I know nothing about dog sleds and don’t know why this particular sled is so heavy. Maybe it was made to slide on ice? Most of the sleds I’ve seen online are made of wood and look much easier to push.
I think I’ll have to keep hunting for a light-weight sled or some other solution. Will give this one a try when the snow flies, but I have a feeling this will just be a conversation piece and maybe a Christmas decoration in December.
Anyone need a big, heavy, newly refinished dog sled;-)
Parents of kids with disabilities deal with a chronic grief that never goes away. In the beginning, it is an intense grief similar to the stages following the death of a loved one, denial, anger, bargaining, depression, and eventually acceptance. We are grieving the loss of the “normal” child that might have been. But the child is still with us, so the cycle of grief never ends. Transitions in the child’s life often get the grieving cycle started again. For example, when the child starts school, has a birthday, goes to their first dance, a graduation; or worse, the child may miss out on these typical transitions.
Thankfully, the intensity of these emotions tend to fade over time and we eventually learn to cope. But the grief is always there and sometimes you just never know when it will raise it’s ugly head. Sometimes the grief can hit you when you least expect it. My life is good, my family and I are healthy and happy. I’m able to care for my boys, I’m coping well and I’m content and happy. Some people wonder how I manage to stay so positive with three children who all have special needs. For the most part I’m it that acceptance stage; after all, I’ve had 15 years to work on these issues.
Some parents of children with disabilities describe life as a roller coaster ride. Others say it’s more like bumper cars, you never know when something will sneak up on you from behind and hit you like a ton of bricks. I did feel like I was on a roller coaster when the boys were young. Things moved so fast, too fast. I could barely catch my breath. I had no control over the direction my life was heading and no way to get off the ride. But now, I think the bumper car analogy is better. You merrily drive along, minding your own business, when apparently out of nowhere, something hits you from behind. That is what happened to me today.
I was checking my morning email and I got a notice from JibJab that the new “Elf Yourself” script was out. If you’ve never heard of Elf Yourself, it’s a popular seasonal ad from OfficeMax where you can turn your family and friends into elves by sticking heads on elf bodies. It’s just silly Internet fun that I find hard to resist. This year you can make Disco Elves, and being a 70’s girl, I decided to have Rich dancing with the twins. I happily spent too much time choosing photos, cropping and fitting heads into the elf costumes. It wasn’t until I played my finished project that I got hit from behind. The overwhelming sadness of seeing Eric dancing around and looking exactly like is twin brother just made my heart sink. The boys were dancing around with their dad, just like it should have been…
So, the grieving cycle starts again. You don’t necessarily go through every stage and the emotions are in no particular order. I’m not in denial and there is no one to bargain with, so right now, I’m somewhere between anger and depression. But don’t worry; I’ll work back toward acceptance. I’m a veteran and I know this hit won’t keep me down for long!
Oh, and Happy Holidays!