Julie is mother to Katie, who contracted viral encephalitis when she was 6 months old. The virus caused severe damage to her body, including her ability to breathe. She was placed on a ventilator and spent three years at a pediatric intensive care unit. Created in 1982, the home and community-based waiver program often called the Katie Beckett Waiver program, allows children who would otherwise be hospitalized or institutionalized to get treated at home and continue to maintain Medicaid eligibility. Katie was the first recipient of this waiver. Her mother, Julie Beckett, worked with Congress to obtain this waiver.

In her keynote, Julie shared the timeline for the national healthcare reform legislation:

May 20: bill will be introduced
Aug 22: they hope to pass it
Jan 2010: they hope to have it in place

Julie shared that they are moving very quickly to get this reform in place and that the current draft of the bill does NOT include provisions for individuals with disabilities; it basically treats everyone the same whether they have special needs or not.
She emphasized that her decades of advocacy work have taught her that even worse than being uninsured is being *under-insured*–and that we need to make sure that people with special health care needs are included in this bill.

Katie and Julie Beckett asked us to participate in the phone-calling efforts to change the bill to include provisions for individuals with special health care needs.  We can’t leave individuals with special health care needs behind as we “move forward.”
Tomorrow, May 13^th is the national call-in day for this issue
.   Please see the instructions below from the ARC & UCP on how to help tomorrow.

It’s easy to do and so important.  Please share this and thank you very much for your help!

The Arc and UCP Needed to Make Calls to Senators on May 13^th

Fixing the health care system is a top priority this year for Congress and the Obama Administration.   While there is commitment by some to include long-term supports and services in health care reform, there is no guarantee that this will happen without strong public support.

The Arc and UCP are working with several national disability and aging organizations in sponsoring national phone-in days to show public backing for including long-term supports and services in health care reform. We must establish this public support with Congress. We want this joint effort to generate at least 10,000 phone calls to the Senate on May 13^th.

Toll Free Number: 866-459-9232

What to say:

• Hello, my name is ____ and I live in ____.
• I believe that health care reform must include long term services and supports.
• I urge Senator ____ to support including long term services and support in health care reform.
• This issue is so important to me because ___________________
• Thank you.

The Coalition for Citizens with Disabilities is providing this toll-free number for constituents of member organizations to call their Senators.  We need to demonstrate a strong response from The Arc and UCP, your members, and your constituencies.

» Spread the word «

Dial the toll-free number between 8:00 AM and 6:00 PM Eastern and ask to be connected with your Senators. If the line is busy, try back later. Once you have completed the call, be sure to give feedback.

Background:
Why Include Long-Term Supports and Services
in Health Care Reform
While 48 million people lack insurance/coverage for their health care, 250 million people lack insurance/coverage for long-term services and supports. Ten million Americans daily need long-term services and supports with 40 percent of them under the age of 65. Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.

Virtually every American will face the need of a family member needing long-term services and supports. And yet, the nation lacks a comprehensive national system for financing and delivering long-term services and supports to individuals with disabilities of all ages.

While there is commitment by some Senators to include long-term supports and services in health care reform, there is no guarantee this will happen.

The Senate Finance and Health, Education, Labor and Pensions Committees are are scheduled to finalize their legislative proposals for health care reform within the next two to three weeks. The bills are expected to be merged on the Senate floor in June. The three House committees are also developing their own legislation, but are not as far along as the Senate.

We must call on the Senate to provide real health security by including long-term services and supports in health care reform legislation!

Thanks to Johanna Mattern Allen, the ARC and UCP for this information

© 2009 The Disability Policy Collaboration

I guess overall I’m certain we are doing the right thing. It is just that some people I trust spoke out against it and I guess it shook my confidence.  I guess that it is to be expected. Not everyone is going to be on board with an invasive procedure – no matter what it is. I think that most parents have that problem to some degree. You want to be so certain you are doing the right thing you rehash the whole thing in your mind over and over until you eat your gut in the process. Sometimes it’s particularly hard because you are weighing (like I am) the variety of issues that your child has going on and how this one issue (in my case, Katherine losing so much weight) is impacting all these various issues.

Where I have come down is that no matter how much I value and trust the voices of dissent on this, the people who I trust most – me, her GI and cardiologist and my family -  Joan, dad, his wife Mary and my husband have all supported me in this decision. I have a further network of friends and family who have also encouraged me to just think it out logically – actually making a list of reasons why I think I should do this and why not – and it’s really helped. Sounds like something I might have done to make a decision about who to go to prom with in High School (although that wasn’t ever an issue! LOL)

Hopefully this is as temporary as we plan it to be and that it gives Katherine an additional tool to gain weight, to increase her appetite and allow her to gain her strength back and then maintain it on her own so that this will be a brief blip in Katherine’s history.

Do any of you second guess yourself on all the decisions that have to be made for your kids? How do you go about making these decisions? Do any of you have kids with a G-Tube? Any advice you’d give me on care, feeding, anything I should know? Please feel free to share!

It was the second time I’ve really had to deal with hospitalization for Katherine since Donovan was born. It hasn’t gotten easier. As awful as it was I know full well I’m really lucky. I have both sets of grandparents who live within 10 or so miles of us and are

1. retired (or mostly so)
2. available (with rare exception)
3. very involved with their grandchildren

My father and stepmother were with me as we took Katherine to the Emergency Room. Philip’s parents took over picking Donovan up from school. Of course that was only the first obstacle – we had a full week of obstacles while we juggled getting my husband to work, Donovan to and from school all while trying to maintain some sense of normalcy for him and someone to come up and relieve me once a day for an hour or so in an effort to make sure I wasn’t headed for a rubber room by the time this whole week was over. All things considered the week went pretty smoothly but it could have easily been disastrous!

At age 16 my parents left me at night when I was in the hospital. My mom was there all day with me but leaving me at 8pm and returning at 9am or so the following morning really wasn’t a problem. This is not even a consideration with Katherine. Katherine got freaked out every time I walked across the hall to the family kitchen to grab a cup of coffee let alone what would have happened if I had left her overnight and yet without my family I’m not sure what the heck would I have done!

We were in the best possible place, not only for Katherine’s medical care (a top rated children’s hospital in smack-dab in the middle of Emory University) but a children’s hospital is only dealing with children and is set up to give a lot of support to parents and the small patients alike. That being said I’m certain (because I read the handbook) that Donovan would not have been welcome to spend the night although he was welcome to visit during visiting hours. Realistically with all that was going on with Katherine physically however (and trust me when I tell you I’m doing you a favor by sparing you the gory details) having a toddler (who is making up for lost time with regards to the terrible twos) in the middle of all that was going on there was not going to be in any way desirable. I consider myself pretty good at handling both kids at the same time but even I didn’t want any part of that action!

About 2 days in as I was figuring out how Donovan was going to be picked up by one set of grandparents and transferred to the other because of various scheduling issues it suddenly occurred to me that there had been a time in my life where this whole thing would have been impossible. How do parents who have no family support or are single parents do it all under these circumstances? It suddenly dawned on me that eventually I wasn’t going to be so lucky. My parents as well as Philip’s are getting older and at some point I could very well be on my own in having to handle a situation just like we had this past week. Of course I hope it’s not going to be for a very long time, but I can’t really count on that. Because of this I need to figure out some basic kind of plan to have in place just in case. Realistically it’s probably not quite as important as all the legal plans, financial plans and the life plan or letter of intent….but it could go a long way to increasing my peace of mind to have something written out – Just In Case.

I went to therapy several years ago – things had just gotten catastrophic in my mind – work, home, everything. I couldn’t function except in the most basic of ways. My therapist – who I wish I could clone for the world he’s just that good – said ok so what’s the absolutely worst case scenario? I described it in vivid detail. He said ok. So now we’re going to write down what you’re going to do in that worst case scenario. He and I came up with the plan and it brought me some real comfort. I carried that plan around with me for quite some time. I was certain I would need to call on it at any moment. While I haven’t carried it around for the past year, it still sits in my jewelry box – Just In Case

Let’s just hope the Just In Case never is. Meanwhile I’ll continue to get my plan in place

Hello, my name is Maria Dellapina and I am writing to inform you about an opportunity to enhance the lives of the children we spend our lives advocating for.

I am a mother of an nine-year-old daughter with Down Syndrome and have
struggled through out her life to fit her properly in eyewear. Being an
optician for over 25 years, I was constantly searching for frames that fit
her unique needs. After realizing early on that I was fighting a losing
battle, I took it upon myself and my experience as an optician, to design
and create a special line of frames that dramatically enhances her abilities
to function in eyeglasses.

I am proud to say that recently I was able to partner with a manufacturer
who has developed my design into a workable frame for children with DS and
other special needs. SPECS4US Inc., Superior Precision Eyewear for Children
who are Special, is my vision to bring specially formated frames to enhance
the life of not only my daughter, but the lives of all the special children
struggling with this problem every day.

I have fitted a dozens of children in the frames, and have seen tremendous
improvement in the lives of all of them. Parents are e-mailing and calling
me to express their gratitude for enhancing the quality of their children’s
vision and ultimately their day-to-day lives.

As I am only one mother attempting to advocate for such a large community, I
would appreciate your help in spreading the word to those I might not be
able to reach. If your organization produces a newsletter or maintains a
website, I would like to ask your support in publishing the following
information below to reach your community.

If you would like to speak with me directly, have any further questions or
would like a sample article ready for print, please feel free to call me at
1-800-586-1885 or email me at info@specs4us.com. Please check out my webpage
www.specs4us.com, to learn more about my cause. Thank you in advance for
your time and support.

Sincerely,

Maria Dellapina

Founder SPECS4US Inc.

This past couple of weeks has been something like that. I think that it really hit home for me when I got a fundraiser mailing from the Alzheimer’s Association. On the back of one of their pamphlets was something well worth reprinting – it’s the 10 Symptoms of Caregiver Stress. Of course this for them is based on caring for an elderly loved one but it seemed so relevant to me I thought I’d just modify it some to show you how applicable it is to us.

1. Denial – about the disability and its effects on the person.
2. Anger – at the person with the disability or others about any number of things – the injustice of it all, the level of available treatments, the prognosis, the long term ramifications, the drain on your family’s resources, financially and emotionally and about a million other things - and that people don’t understand what’s going on.
3. Social Withdrawal – from friends and activities that once brought pleasure
4. Anxiety – about facing another day and what the future holds
5. Depression – begins to affect the ability to cope
6. Exhaustion – makes it nearly impossible to complete necessary daily tasks
7. Sleeplessness - caused by a never-ending list of concerns
8. Irritability – leads to moodiness and triggers negative responses
9. Lack of Concentration – makes it difficult to perform familiar tasks.
10. Health Problems – begin to take their toll, both mentally and physically. Usually it’s not an overwhelming illness – just the feeling you just haven’t felt “right” in some time.

On this last day of the work week I’d remind you that an intregal part of caring for your child is caring for yourself. It’s always hard to “find” time to do this…so many demands on our time are always pulling at us looking for attention. Make it a priority to take some ‘me’ time this weekend, quiet your mind and relax. I’m not even talking a half hour – 5 minutes is a great start.

One of the ways I am working at taking time in my own life to try and change the stress is meditation. I know you all have this vision of me legs crossed, palms facing upward chanting UHM but it’s not that it at all. As it was originally explained to me by a great physical therapist is that it’s concentrated relaxation. One of the sites I have found most useful (and Forbes actually named one of the best of the web) is Learning Meditation.

Within the Meditation Room there are numerous available meditations for adults and children alike. Some are only 2-3 minutes long – some are as long at 10 minutes and there’s a wide variety in between. What I like is they are attainable even with only a short amount of time. The benefit to me has been noticeable and I hope it will be for you as well. It requires Real Player to listen to the audios or it has a printed version of the words that you can use while listening to your own relaxing music (think Enya, NOT Mettalica)

Mostly where I think it’s helped me is with my irritability (although my husband may argue this point ) but I think it is starting to move over into the sleeplessness part of life as well. I seem to be having a slightly easier time of falling asleep. Who knows where it might benefit you? I know that no one should refuse themselves 5 minutes a day (at a minimum) to regroup and refresh. What have you got to lose?

Well ain’t that the truth! We’re in the clear on the kidney. Apparently what was seen on the ultrasound was some kind of shadow or something and her kidneys are FINE. The past week has been pretty amazing. The thought that there could be something really wrong rocked me to my core.

It made me think about what I would do if it were really bad, what if it were finally something we couldn’t defeat and put in it’s place. There are some special parents who have to face that reality. I think they are probably the most amazing of special parents. The strength it would take to get through something like that…..I don’t think I’d have that in me.

It made me think of an article my husband had pointed out on MSNBC a couple of months ago that kind of ties today with yesterday in terms of posts. It’s a tearjerker so if you’re at all inclined to tears I recommend a box of tissues before you set out to read it (I needed a few). It tells the story of Robbie and his strong parents Jeanne and Steve. Jeanne and Steve found out during the pregnancy that baby Robbie had Trisomy 18 and would not likely live much past birth. While I loved the story of Jeanne and Steve, I believe that what they experienced is not different than what most people will experience during their pregnancy when the medical establishment discover disability in a fetus. I won’t belabor the point but it’s critical that there be a change in attitude and more than one group is trying to do just that for these special parents who are parents for far too short a time.

PerinatalHospice.com is a good example of the movement to support parents in what must be the most heartwrenching of decisions ever needing to be made. What I like about this is it gives parents a choice. It’s all well and good to say there is a choice, but to say there is a choice which is to terminate or continue the pregnancy with little or no support. No one should have to go through that alone.

There is also an author, Amy Kuebelbeck, who has a book out called Waiting for Gabriel which discusses cherishing whatever life your child has. And isn’t that really the point? Isn’t that what each of us try to do whether our child has 1 minute, 2 hours or 75 years? We want our special kids to make the most of their time here on this earth and with us. These parents don’t have any choice but to make the most of every minute, every second they have with their small, precious bundles.

Thinking there could be something ticking like a time bomb, growing on Katherine’s kidney made me think about things like that – had I made the most of the time we had together? Had I made the most of her life and maximized what she could have done, experienced, loved? I like to think I’ve done a fairly good job….I also think like just about everyone else I could do better. I’ve been given a real gift, one that so many others would kill to have. I want to make sure I don’t waste it. I just hope I remember that feeling. I hope that it doesn’t take something like a potential tumor to make me remember that and be faithful to that.

My hope for those reading this is that they can take this experience and live life as it should be lived – as every moment is precious and should be given it’s all because none of us know when it could all be gone. Today I was blessed. Today I got another moment. I hope you all get many more moments.

I swear to God (and I apologize to God for swearing) but for crying out loud! As the years past it becomes apparent to me that sometimes you just have to do it yourself.

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: Yes, my name is Kyron and my daughter is Katherine and we spoke several times yesterday and you said you would have the results of my daughter’s abdominal MRI from April 24. As of today I still haven’t received those results.

Doctor’s Office: We still don’t have those results in.

Me: Well you told me yesterday you would.

Doctor’s Office: I plan on calling them again today.

Me: Well, you told me that yesterday. What happened?

Doctor’s Office: I called and they still haven’t faxed the results.

Me: Well you should call them again and tell them you have an incredibly irate parent awaiting these results and beg them to fax them immediately so that you can get her off your back.

Doctor’s Office: I’ll do that right now.

Me: {note terse voice} Thank you.

Off the phone we go and then I call my contact at the facility. I get a name and number of a supervisor. I get assurances it’s been faxed already but they will be happy to fax it again if the doctor’s office will just call and request it. No problem I assure them. I take a name and direct number (I’ve been transferred at this point a couple of times) and thank them for their assistance.

My belief is that it has been faxed and the doctor’s office is pretty much incompetent since this person at the facility pulled everything up in a couple of seconds flat. Of course they couldn’t give me information over the phone because they have rules about that. So here we go again…

Doctor’s Office: This is (Name withheld to protect the guilty) may I help you?

Me: This is Kyron, Katherine’s mother AGAIN. I just got off the phone with the MRI facility and you should call Christine at 404-555-1212 right now. She is expecting your phone RIGHT NOW. She has the information already pulled up – all you have to do is call and give her the fax number. {Inference is that she should be appalled that I am doing her job but it’s fairly obvious that she’s non-plussed}

Doctor’s Office: Oh, ok, I’ll call right now.

Me: Thank you, I’ll call you back in one hour.

Doctor’s Office: Oh, ok.

Would you believe as of 5pm tonight I am STILL chasing this freaking report. My only comfort is that if it was catastrophic I’m hoping that the radiologist would have expedited it.

How come that is such little comfort?

Katherine has had hypertension for about a year now. We had attempted to address it with diet and exercise alone and it became clear about 2 months ago that this was not working and the blood pressure continued to rise. We put her on medication but the cardiologist we’re working with wanted to rule out renal artery stenosis (narrowing of the renal artery) which can many times cause hypertension. They did an ultrasound and instead of what they were looking for found a mass on her kidney. Well this brought on our first association with a nephrologist.

The nephrologist wasn’t particularly comforting to be honest. The cardiologist seemed to think it was likely to be a cyst – the nephrologist seems to think that cysts are far more comforting in the 50+ set (which leaves Katherine out). So he thinks an MRI to truly understand what it is. Fine. So off we go and wait 4 hours to have the test done LAST Friday only to be told at the last minute that all the metal in her mouth (braces) has to be reviewed by the orthodontist because there’s stuff in there that could break their machine – ok and worse – break Katherine’s mouth. So how do you get mad at them for stopping us from doing that?

The man who runs MRI at the facility we were at gave me his personal business card and said as soon as we could get the parts of her braces which were conductors out of her mouth we could call him and he would not make us go through the wait process again. True to his word I called him and within 1 hour his assistant called us back and had us scheduled for the following day.

This time the test went off without a hitch. She was a real trouper while they gave her an IV for the sedation and contrast. They said after 55 minutes they had gotten what they needed. Fantastic – what did you see??!! Now you KNOW that the answer that followed was one that has frustrated parents from sea to shining sea – We have to wait for the radiologist to review it. Oh SHOOT ME!!

Me: Well now how long?

Them: Oh within a week.

Me: I don’t mean to be impatient but their is SOMETHING ON MY DAUGHTER’S KIDNEY. I’d like someone to just tell me what exactly it is and if it’s something we have to be worried about?

Them: Well you could call the doctor and see if he can get it sooner.

Me: So you mean we have to wait until one doctor actually connects with another doctor??? Does Armageddon happen before or after?

Them: tense laughter, polite smile

So now having called the doctor first thing this morning, first thing after lunch break and 10 minutes before 5 here I am waiting until Monday and praying that the God who saw fit to entrust me with this precious package will understand that I’m mortal and I can only take so much waiting….

The American Heart Association believes that all of the estimated 2.5 million children taking ADHD medications should have an EKG to rule out problems. This test should be done on children both who have been taking the medication for some time as well as those who have just started. No one believes at this time that the medication is causing heart disease. It is believed that somewhere in the neighborhood of 1 in 50 of children being treated for ADHD may have a previously undiagnosed disease. For some reason children with ADHD are 3 times more likely to have heart problems.

This MSNBC/Today Show video is well worth watching if you have a child taking ADHD meds. Please take a minute to point it out to a friend who has a child who is taking these meds if yours isn’t. It’s information that should get out there. While it’s not reason for panic, it is most certainly reason to check with your pediatrician or prescribing physician. An EKG is an inexpensive, non-invasive procedure that takes only minutes but could absolutely save a life.

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

School’s Basketball team adds special needs children
Middle School Basketball team in California shows what the true meaning of sportsmanship is with inclusive basketball team

No Dental Care for Special Needs Patients
Adult special needs patients in Cork, Ireland are going without even basic dental care because of the lack of anesthesia services

Profile: Melissa Piotrowski teaches music to special needs students
22 year old Melissa Piotrowski takes a love of music and shares it with special needs children

11th Berkshire Disability Day planned
Event is a day of celebration and education to increase community awareness of the accomplishments of those with diverse abilities. Showcase of available services also planned.

Book transports child with special needs
Photography teacher Joe Baltz has his students create a 16 page book starring a child with special needs.

Alzheimer’s, Down’s link sheds light
Researchers at the Byrd Alzheimer’s Center and Research Institute say they have recently learned some important new things about the link between Alzheimer’s disease and Down’s Syndrome

My baby, right or wrong
Woman chooses not to test unborn child for Down’s Syndrome and the reasoning behind her choice