Special People Parenting Special Kids

How to Love Medical Records

May 12, 2011 Author: Kyron | Filed under: Medical, Services

A few years ago I wrote a piece about Medefile. As a matter fact it was probably one of the first pieces I did on this blog (January 2008). Medefile is a fee based service which helps gather medical records, digitize, organize and store them online – giving you access to these records 24/7/365, anytime, anywhere. This past week when Katherine was hospitalized, I was reminded of just how happy I am we continue to use this service! I felt I should share with you again just how beneficial this service can be to not only caregivers of chronically ill or older people but incredibly relevant to those of us who parent special needs children – especially those of us who have children complicated medical issues.

This past week, a major piece of making decisions  for Katherine and how the doctors were evaluating her tests results was made so much easier in no small part because of Medefile. I was able to get doctors instant access to prior blood work results, prior CT scans, prior MRI’s, prior EEGs and give these new doctors a chance to look at the new test results in a different way. They were shown what was her “normal”, her baseline and from there we could make informed decisions about her current medical care. I used my iPhone to pull this information for the doctors. I could have easily done it on my iPad or laptop if I had them available at the time. More importantly there are options available to get the doctors records (if you aren’t as overconnected as I am). Medefile can fax records to your doctor. You can also use the USB “MedeDriveTM” that stores all your records on a thumb drive medical professionals can use to access information. There is also a wallet card which allows medical professionals emergency access right from the website.

Medefile has a very easy to use website interface that guides you through the process of entering:

  • General information (height, weight, blood type)
  • Emergency contacts
  • Doctors
  • Hospitals
  • Surgeries
  • Pharmacies
  • Family History
  • Medications
  • Allergies
  • Medical conditions
  • Insurance

Medefile then goes out and contacts the doctors and hospitals, gathering all of your paper records  electronically – doctors notes, x-rays, MRI’s, CT scans, blood work – you name it everything related to that person’s health history – transforms them into digital images and categorizes them so that they’re searchable.

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AbilityPath.org holds Facebook Community Chat

May 9, 2011 Author: Kyron | Filed under: General, Resources

Ability Path is an online community for parents of Special Needs children and professionals who work with them. Combining Social Networking features and expert content from a panel of educators, parents, therapists and other medical professionals, Ability Path’s mission is

to build a community that brings together professionals and parents of children with special needs from around the globe to learn, share and strengthen the process of supporting the ongoing healthy development of children and youth with special needs and disabilities.

Based in the San Fransisco Bay Area of California, AbilityPath.org was created by Community Gatepath, a nonprofit with over 90 years of experience serving families and children with special needs.

Tomorrow night (May 10, 2011) on Facebook, Ability Path is going to have a one hour community chat at 9pm EST/6pm PST right on their facebook page which will be accessed on a special tab. You can go over and “like” their page in advance and post any questions you might want answered or you’ll be able to post during the chat. The experts that will be at this chat are Kim Stagliano (mom of three autistic daughters, author, blogger) and Dr. Heidi Feldman (Ballinger-Swindells Professor of Developmental and Behavioral Pediatrics at Stanford University School of Medicine).

I’ll be joining them. It sounds like a great use of social networking to get answers to questions you may have wished you had a way to ask. Why not click here and let them know you’ll be joining us as well.

A Day of Normal

May 7, 2011 Author: Kyron | Filed under: General

Katherine has been very lucky. We’ve lived in places that had opportunities for her to participate in activities other special needs kids would kill to get the opportunity to participate in. She’s not only participated in special needs events like Special Olympics and Challenger leagues but even been welcomed with open arms to community theater groups like the Henry Players. At some point I’ll be happy to elaborate on how great it is to have our kids participate and the many benefits it offers them. Today however, as I sit in a hospital room with my daughter on the eve of Mother’s Day, I find myself  thinking what’s nice about her participating in those activities for me.

I have in the past shared my love of the story Welcome to Holland by Emily Perl Kingsley. It reminds you to enjoy the trip to Holland while recognizing that you were expecting Italy and most of your friends are regaling you with stories of the beauty of the land. In a recent article in Florida Today they highlighted the local Viera/Suntree Challenger Leagues competing in the State Tournament. In this article, one of the athlete’s dad says “Here he is accepted for who he is and what he can do, not what he can’t”. A day of normal. This child and by extension their parents have an opportunity to participate in something other parents too often take for granted. Those are the days I live for. When we’re at a horseback riding lesson. When I bought my daughter a dress to participate in the People First of Henry County Special Needs Pageant. When my daughter attended the Brevard County Parks and Recreation Program prom. Proms, pageants and sports are all things most parents can just take for granted as part of the tour of Italy. Holland doesn’t always offer these things, especially in the age of budgetary cuts. We are blessed and these moments of normal help make the trip to to Holland all the more amazing. May you all enjoy your Mothers Day no matter the country you celebrate it in. May it be a day of blessings and “normal” for you and your family.

Bravery comes in all shapes and sizes. Sometimes its a firefighter running into a burning building that everyone else is running from. Sometimes it’s a mom who bravely holds down her child while a nurse sticks yet another needle into them, just because they know it’s needed. Sometimes its a person or a group of people who are willing to step out and take a stand, because it’s the right thing to do. Late Monday over well over 80 brave people not only stood up to some pretty big guns (Congress) but were willing to be arrested to make sure they were heard. According to Politico.com, Capital Police arrested 89 individuals on misdemeaner unlawful conduct charges for occupying the rotunda of the Cannon House Office Building. The protest was against the Medicaid Plan proposed by Rep. Paul Ryan (R-Wisconsin). These cuts advocates believe will force people with disabilities to live in nursing homes rather than in their own homes.

The budget resolution, which passed the House, would turn Medicaid into block grants. It would also reduce the program’s spending by hundreds of billions of dollars over the next decade. Combined with state cuts the plan has the real possibility of restricting funding so much that the support to live independently would not be there for people with disabilities.

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. Without question, ADAPT is known for civil disobedience, however, don’t doubt for a moment the bravery it takes.  I don’t know that I’d have the guts it must take to know that your actions will likely get you arrested, although by doing so you bring a light on the very real issues facing those with disabilities in this country.

It’s difficult sometimes to decide to post things that have a political bent. I hope people will understand that these are issues that impact real people and that I live with one of those people. I think what I admire about ADAPT members is that so many of them are self-advocates. I spend so much of my time out there advocating on behalf of  Katherine and Donovan. I know that it pushes me into areas that I know on a daily basis I wouldn’t be comfortable going, but I do it because it’s for my babies. I also know I’m not brave enough to be arrested even though I KNOW these cuts are going to impact so many people, people I live with, people who I care for and love and consider friends. What’s worse is I feel that they are “easy” cuts to make. I think it’s much harder to make cuts to people and industries with big lobbying machines when your job is to win what is in essence a popularity contest (remember high school?) If you come out against a group with great money, they will take their big money and crush you. Come swinging after something that impacts the poor and disabled? Yea, money’s not freely flowing over there. Less to worry about.

Maybe making this post is a little moment of bravery. Maybe it’s my time to add my voice to those others who know that fiscal responsibility doesn’t have to mean leaving behind moral responsibility. No matter your political affiliation, your beliefs, etc, I think we can all agree to stand up for what you believe in, to put yourself out there is one of the bravest things you can do. Here’s to the brave person inside of each and every one of you.

 

God Bless Lora

May 2, 2011 Author: Kyron | Filed under: Advocacy, Inspiration

There’s rarely an opportunity that I’m at a loss for words. Today seems to be one of them. I received word late last night….while most everyone was reveling in the news that Osama Bin Laden had been found and killed, that a woman who had had such amazing respect and admiration for had passed away. The news literally took my breath away. Lora Sue Lastinger Langley, beloved wife, mother, daughter, sister and friend, passed peacefully from her earthly being on Sunday, May 1, 2011. I keep reading that sentence and finding it hard to believe it’s real.

Lora gone? How could that possibly be? Lora had more fight in her than about 100 of me (and that’s saying something). Lora and I met while I lived in Henry County, GA. While I was battling my own disabling RSD, Lora came into my life like – something like a small, smiling tornado icon smile God Bless Lora How could it be that Lora, that whirlwind of energy and love, had left this planet and the earth didn’t immediately knock me to the ground?

Lora had a tireless ability to advocate for our kids. She had strongly held beliefs about inclusion, about fairness and equality, about what amazing contributions our kids make to the greater world. She could be aggressive, and some might have even said abrasive in her approach. I admired that. That not withstanding, she had amazing southern charm and used it to charm people into doing a whole lot of things I told her she’d never accomplish. I LOVED that!

The world of the special needs community in Henry County, Georgia and the greater Atlanta area, is just a little bit poorer for the loss of Lora today. If I take any comfort it’s that it has so many amazing people there working for our kids, and our kids who become adults. God Bless and God Speed Lora.  We will all try to carry on and carry forward your work, and in any small way we can, your spirit and determination. Our love and prayers are with Colby and your whole family.

 

Pretty is as Pretty does

Jun 19, 2009 Author: Kyron | Filed under: Advocacy

This week and next we’re getting ready for Katherine’s participation in the Mr. & Miss Special Henry County Pageant. She’ll be competing in the teen division. We have the obligatory new dress and new peek-a-boo toe shoes (yup two pairs – thanks Zappos for having them on sale!). We had a *process* done to our hair to straighten out the curls for a few months (mom likes this one – while our Instyler has made life much better I don’t need to add hairdresser to my full-time resume) and we’re excited about the next Saturday morning when you can find mother and daughter getting manicures and pedicures (ok, I’m gonna skip the pedi) and then Katherine will get her updo and become the glamour queen we already know her to be icon smile Pretty is as Pretty does

All this beauty for the outside but as I constantly remind her it won’t matter a bit if her behavior doesn’t reflect the beautiful young lady we can see on the outside. Unfortunately I think it may be a lesson I’m the only one out there teaching my children. Increasingly treating people poorly seems to be acceptable if not downright in vogue.

I read a blog posting today that a childhood friend of mine shared on her facebook page. Click here and take a moment to read it for yourself. It’s absolutely worth the read – well written and makes a point I don’t think anyone thinks of enough these days.

This post focuses on treating service people with respect – not talking on your cellphone while conducting business being its jumping off point. Saying Please and Thank You to your waiter/waitress, making eye contact with a manicurist or hairdresser….and absolutely – I agree! However, while I agree with the important point she was making about treating these people who perform duties that make all of our lives a little bit better, I thought it stopped one point short that we’d all do better if we treated EVERYONE with respect.

Too often I’m reminded of this because I see how people look at Katherine, talk about her as if she’s not even there when she’s sitting at the table next to her, or worse yet, ignore her as if she does not matter. As if because she is not the *same* as them she is somehow lower on the totem pole of life (the part that is buried in the ground). When is it that it became ok to treat ANYONE with less than the same dignity that you expect yourself?

Sure that’s a rhetorical question. Throughout history people have been treated with less dignity than they deserve. History is rampant with it. Native Americans, slaves, the holocaust – or any or the more recent genocides. These are just a small sampling. Treating individuals without dignity continues to be an acceptable practice. It’s probably more acceptable with the disability population than with any other in the world – it’s probably one place that countries could find commonality. Think about it….its ok call people “retard” “idiot”. It’s ok to look away at a person who is in a wheelchair. It’s ok to place people in an institution because it’s “easier” than helping them lead productive lives as a part of the larger society.

I couldn’t agree more that we need to treat people with dignity, but stopping at service people (which for the record are notoriously treated like crap – a true travesty) is really just several steps short. Grandma Murphy always told me pretty is as pretty does. and it’s completely true and unfortunately apparent that too many people didn’t have enough exposure to Grandma and if they did – they’ve forgotten the lesson or failed to pass it on to their progeny. Most of you reading this are parents of at least one special needs child. You get treating your own child with dignity is important. You may also extend that to all people with dignity. How do you treat the people you meet every day? Your landscaper? Your mailman? The custodial staff at your office? The lady at the dry cleaners? The stranger struggling to get their groceries in the car while wrangling a 3 year old (oops – that was me) Teaching children isn’t as much about telling them how to treat others as it is MODELING the behavior you believe is appropriate and acceptable.

Everyday holds an opportunity to lift someone up, give someone a smile. A simple hello and a kind look may be all it takes. Think of how beautiful you’ll look. Most days, my daughter is the most beautiful young lady on the planet. Not because of her straightened hair, her manicured nails or gorgeous coral halter-top dress but because she never fails to treat everyone as if they are the most important person on the planet. How much we could all learn from her!

I was pleased to receive notice about a speech an amazing woman, Julie Beckett, gave recently to a group in Madison, WI (I am so going to have to get up there someday with the excuse of visiting my brother)

Julie is mother to Katie, who contracted viral encephalitis when she was 6 months old. The virus caused katiejulie National Healthcare Reform and individuals with special needssevere 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 13th

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 13th.

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

arc National Healthcare Reform and individuals with special needsucp National Healthcare Reform and individuals with special needs

© 2009 The Disability Policy Collaboration

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