Special People Parenting Special Kids

With the Morning Coffee…..

Jan 4, 2008 Author: Kyron | Filed under: Disability Groups, Political

Yesterday the beginning of the 2008 Presidential Primary season started with the Iowa Caucus. Whether you consider yourself Democrat or Republican, Liberal, Conservative or Moderate is really immaterial. I hope you believe as I do it’s a privilege to be able to use the power of a vote to express your personal beliefs and influence the course of our nation, state and even local municipality.

aapdlogo With the Morning Coffee.....While I have several issues that are close to my heart, one in particular is stands out above the rest – disability issues. I try to get a broad cross section of information but consistently I find that my best source of information is the AAPD – American Association of People with Disabilities .

What I like about them is they are non-partisan. Their purpose is strictly to be a comprehensive clearinghouse for disability-related news and information. They have a section dedicated to the 2008 Presidential Elections. The AAPD in conjunction with ADAPT, NCIL, and SABE has sent out questionnaires to all the candidates and are posting the responses as they are received.

If disability issues are as critical to you I urge you to check out the information available. If you want to exercise your rights further by contacting your representatives a great site for locating them is VoteSmart. It has an easy tool to locate your representatives by entering your zipcode + 4.

What issues within the disability arena are important to you? Early Intervention? Special Education and No Child Left Behind? ADA Restoration Act? Employment, Money Follows the Person? SSI? Tell us! And don’t forget to tell the candidates with the power of your vote!

Do I have the Will to go on?

Jan 3, 2008 Author: Kyron | Filed under: Legal

Ok, now that’s a question I have sometimes asked myself during really rough behavior days (or weeks or months) or the stretches of intractable seizures or other medical mysteries Katherine pops up with and tests my mental and emotional fortitude that’s not really where I’m going with this particular question today.

An article in Business Week (July 2007) says a survey by LegalZoom.com shows about 70% of Americans do not have a will. It goes further in saying that it’s a bad idea, particularly if you have children. I’d have to agree. Wills as defined in Wikipedia as “a document by which a person (the testator) regulates the rights of others over his or her property or family after death”. This is truly the document that you the right to dictate what they want done with their material property and any children, typically those who are minors, but as in our case as parents of special needs kids it can also outline guardianship issues. This is also the document that many parents will need to use to establish a Special Needs Trust (to be discussed in an article later in the series).

The first will I made was when Katherine was about 18 months old. At the time, I had no idea how profound her issues were. Actually, I was damned naive about the complexity of what she would need long term. My first will was pretty basic. I had no money or property to speak of, so leaving her the proceeds of my estate consisted of a small ($25,000) life insurance policy that I had through my employment. I had no idea that leaving her that kind of money flat out could have been a fatal error on so many levels, but again I was pretty naive. The will was about a page and a half and probably would have done more harm than good had it ever been utilized. To be fair, the attorney I used had no experience with special needs situations and for a typical kid, it was probably sufficient. The attorney was sure to tell me that I should review the document every couple of years to make sure that I continued to agree with the provisions and that all the information continued to be correct (I hadn’t remarried, had another child, etc.). That was actually the best advice I got from that session. icon smile Do I have the Will to go on?

So as the years passed, things changed….both in my life, her father’s life and in Katherine’s condition and prognosis. It forced me to get more educated about the realities of Katherine’s situation. I talked with people who’s opinion and expertise I knew and trusted and was given some good guidelines for outlining my objectives with this document. While I no longer have the piece of paper they were written on I can give you the general idea.

  1. Who do you want to trust to be the executor of your will? The executor is the person who carries out the duties of settling the estate – making sure your debts are paid off, your assets are distributed according to the provisions left in your will and so on.
  2. Who do you want your assets to go to?
  3. Do you have specific things you want to go to specific people or is it a percentage of total estate you want to leave.
  4. Do you need to consider passing property in ways that maximize the tax laws?
  5. Do you want/need to establish trusts for minor children or spouse?
  6. Do you need to provide financially for whoever is going to care for any minor children?
  7. Who do you want to take care of your child/children?

Yea even if you get through 1-6 with relative ease, I’m guessing that if you’re anything like me #7 was going to be a humdinger. That’s not surprising. In the LegalZoom.com survey mentioned above the number one reason people had not started or finalized a will was the inability to pick a guardian or agree about a guardian. Now try to figure out who you can ask to take on your day to day life and take in your special needs child with all that goes into that. I can understand why so many parents of special needs children have a hard time getting over the hurdle. It is imperative that they do.

I talk about asking someone because it’s my belief that the person or persons who are being named in a legal document to care for your child, let alone your special needs child should not learn of this bequeath posthumously. Naming a guardian is a serious and thoughtful process on your part – it should be on the part of whomever you name as well. While the likelihood is that you will be here to raise your child into adulthood, the reason the will exists is because that possibility you won’t be still exists, no matter how slim.

What if they say no?

There is always that possibility that the person you approach to act as your child’s guardian is going to turn you down. While that possibility does exist, don’t let it deter you from making the inquiry. If your first choice declines, be thankful that they actually care enough to tell you the truth and that your children will not be raised by someone who is not up to the task for whatever the reason.

The first person I asked to be Katherine’s guardian said no. I believe that was one of the most loving acts. It must have been a hard thing to do, too. I’d be less than honest if I said that it didn’t sting for a moment; I felt that they had rejected us. I wasn’t looking at it from the same perspective as they were. When I got over the initial sting, we talked about how and why they formed their decision and I respected the vast amount of introspection it showed. It truly showed the depth of love I knew they had for my daughter all along. It wasn’t reasoning I had thought of,but it was incredibly sound and I’ll thank them forever.

What attorney should I hire?

Now that I have a far greater understanding of Katherine’s abilities and limitations, and I’ve had the opportunity to research and fight to obtain the governmental programs she needs now and will continue to need for the rest of her life, I knew we could no longer leave our wills as rudimentary as it had been up until that point. We now know that inheritances of any sort could potentially decimate her ability to continue to receive the benefits we had fought for. Because we know that these things are going to be essential to her long term success as a member of society we decided to find an attorney who specializes in the law as it relates to individuals with disabilities.

While there are probably numerous services out there I found someone through the Academy of Special Needs Planners which is a coalition attorneys who devote all or a significant amount working with individuals with special needs and their family on planning for their future. This attorney laid out our whole estate plan including the trust that would protect the government assistance we had fought so hard to win for Katherine.

Do I have the will to go on? You bet I do. I have the will, the trust and all the other essential estate documents we’ll discuss over the next several days. If you don’t – start today.

Tomorrow - Living Wills & Healthcare Power of Attorney

(This is the first in a series of articles that The Special Parent is doing on legal documents you should make sure you have to protect your special needs child. The information contained within this series is for general informational purposes only and is strictly the opinion of the author who is not a legal practitioner. It is not intended in any way to provide or offer legal advice. To obtain legal advice, please consult with your attorney or a qualified legal representative.)

I am blessed to have married into my husband’s family. I love that no matter the struggles, strife or disagreements, when push comes to shove they are there for each other. Take my husband’s beautiful 93 year old grandmother, who our youngest has dubbed GG (for Great-Grandma), for instance. As time marches on, inevitably our bodies don’t operate the way we want. In the past several years she has had to deal with cataracts, falls, broken hips (one side then 2 years later the other side) and most recently, Congestive Heart Failure. GG has lived with my in-laws for years now. Certainly it wasn’t always because of health reasons but at this point, there would be no way she could live alone without assistance. My mother-in-law cares for her day in and day out. My father-in-law is the only one in that house that can drive so he’s responsible for taking care of transporting GG to doctors, and my mother-in-law for prescriptions, groceries and pretty much anything else she needs.

Of course we hope GG is with us for the next 20-30 years, even if that isn’t reality. It’s interesting that when I talk with my my husband and my friends about what we will do when our parents situations will inevitably change, we do so without any shock or surprise. We talk about the planning our parents – and grandparents have done with regards to end of life issues. Now ask those same people (most of whom have children whether special or typical or some combination of the two) what planning they have done with regards to their own end of life planning and you’d think you had just seen a deer in the headlights! Their jaw apparently loses it’s ability to maintain a closed position and the words inevitably sound something like “ Are you nuts? I don’t have to worry about that at my age!” (Ok, some of the words that come out are slightly more colorful than that icon wink Reorganization part 2:  Must have stayed at a Holiday Inn Express last night )

This is where I would venture to say to those parents, and to you reading now, you’re completely wrong! No matter how young you are, death is a reality for us all. Parents of special needs children have to be even more concerned probably than parents of typical children (although I find personally I’m just as concerned about my typical child, just in different ways). The difference for me is that the planning needed for my special child requires more thought and effort. I feel in many regards it’s hard to do this kind of planning for our special kids because seeing into the future for them is so much more difficult. You can’t necessarily assume the normal life cycle of education, marriage, children, jobs and so on and so forth. However I say this is all the more reason it has to be addressed, and reviewed regularly. It’s why I’ve put this on my reorganization list as well.

Over the next few days I’m going to write about the process I’m going thru reviewing our various legal documents that plan for a time I am no longer here to protect and care for my family. Maybe as someone who lost a parent at a fairly early age I feel that responsibility more acutely. It’s not gloom and doom either, it’s actually a process that gives me an opportunity to dream – and dream big for my special Katherine and assure that I give people I love but leave behind the roadmap and tools they need to do for her as I would want.

I’ll be covering the following over the next few days:

  • Wills
  • Healthcare Power of Attorney
  • Durable Power of Attorney
  • Living Wills
  • HIPPA Authorization
  • Special Need Trusts
  • Letter of Intent/Life Plan

Hopefully this series will starts a dialog with you and your loved ones. I know people who feel that discussions of this nature are morbid and distasteful and maybe they are a tad distasteful. But I think it’s an incredibly important and loving thing to do for your child. Don’t wait….start thinking and talking today.

Resolutions, Reorganizations & Medical Records

Jan 1, 2008 Author: Kyron | Filed under: Medical, Services

Ah it’s that time of year again, the first of January, and we’re all now supposed to make some New Year’s Resolutions. Today you are seeing my New Year’s Resolution in action. My resolution was to stop wondering where I could find the resource I wanted. I chose to take the time I was spending looking for it and turn that energy into creating it.

I’m feeling pretty good about this resolution – like it’s a resolution that actually stands a chance – unlike the lose weight, work out, organize my garage resolutions that always get pushed by the wayside to go to a doctor, email a teacher, research a new treatment, drug reaction, deal with a manic episode, fit an orthotic, oh…or cook dinner. So what if sometimes that dinner is a frozen pizza icon wink Resolutions, Reorganizations & Medical Records

My other resolution actually started a couple of months early – it’s organization – or reorganization. Paper is taking over my life. Whether it’s newspaper clippings, IEP records, or medical records I found something that at least on the medical front has changed my ability to organize and advocate for Katherine medically better than any other previous attempts….and there have been several. It’s this little website called Medefile. (note: I am NOT an owner or investor, just a client) As with anything there are pros and cons to this set up. I’ll try to tell you a bit about the service enumerating what I see as the pros and cons of the scenario. Medefile offers two levels of membership and the one I’m going to talk about today is their Premium one.

medefile Resolutions, Reorganizations & Medical RecordsMedefile is like having an online medical safe deposit box. It is a secure online system which stores medical records for you and/or your family members digitally online. Upon becoming a member they have you complete the first part of the collection process. They refer to this as your Digital Health Profile.

Digital Health Profile

As a member you fill out a pretty extensive medical history (they refer to this as your Digital Health Profile) – family & personal medical history, doctors, medications, hospitalizations, allergies, conditions and on and on. In addition to what you would consider traditional medical files they will also store a digitized copy of Healthcare Powers of Attorney, Advanced Directives, DNR Orders, and so forth. Medefile takes information you provide and forms you download, get notarized, and mail to them and then uses all of this to make medical requests of the doctors and hospitals you work with. All of the information they get back is then digitized and put online in a reasonably easy format.

Information Accessibility

All of this information that they have gathered and digitized on your behalf is is now available to you AND doctors and hospitals you choose to give access to in the following ways.

  1. Online – all of these files can be accessed at the Medefile website.
  2. Fax – the information can be faxed to the medical professional of your choice either by you calling in or by selecting the files you want faxed in your online profile and clicking a few buttons.
  3. Mobile Phone – this includes any internet enabled phone/smart phone/PDA/iPhone. Medefile has a special mobile section to enable this.
  4. USB drive – (sometimes also called a thumb or flash drive) Medefile provides this USB drive they call a MedeDrive which is also password protected. Plugged into a PC, this flash drive contains all the files available online after you download them. You must update this periodically as you update your files online.
  5. 800 number – Medefile provides you a membership card which hospitals and other medical personnel can use to access critical information in an emergency. It still requires user authentication to access more detailed files.

Emergency Notification

Medefile also offers an Emergency Call Service which notifies a person or persons that you have pre-selected if you become ill or injured in an accident (after Medefile is contacted by emergency personnel). List as many or as few as you’d like. We have 4 people listed figuring if you can’t reach one of it’s probably armageddon. (some might say we’re a little too reachable! ) While this probably an oversimplification of all that Medefile offers, you can get the idea. There are other tools available on the website including “Lifestyle Tools” (track blood pressure, cholesterol, blood sugar levels on a daily, weekly or monthly basis which then graphs the results out for you) They also offer an interactive healthcare calendar which will keep track of doctor appointments or even medication schedules and prescription reminders. The calendar will generate email reminders.

Is this overkill? For some of you it might be. Here’s how I see it. I have this child who literally has a combination of 12 (soon to be 13) doctors and specialists of varying types (not including hospitals (5) and orthotic makers). Because of the complexity of her issues we have traveled most of the US eastern seaboard seeking care for her over the years. In addition there was a point in time where Katherine travelled to see her father once a month which meant she was in a state over 900 miles away from where all her treating doctors were.

No matter how hard I tried I never had the information one doctor wanted from another and it was either a weekend or golf day (yup, sarcasm) and we could not get the information out of the other doctor. Sometimes this was no big deal but many times it was urgent. Much of what I was keeping in one form or another in terms of medical records for Katherine now is online, just a click away. My hope is I’ll never be unable to provide a treating physician important information in treating my child. I believe that having this in place (and it did take effort as well as some money to get it all set up) means I am in a much better place in terms of advocating medically for my child. For me these are the pros and they outweighed the cons which I saw as follows.


I’ll be flat out honest, it’s not necessarily the cheapest way to do this. The premium membership described above costs $129 for a child under the age of 18 ($199 for an adult and $179 for a senior citizen, over age 65) with a one time set up fee of $35. In addition to this they pass on any records collections fees that they are charged. So far this has racked me up another $42 in charges and not all the records are in yet – plus they update records as often as you request they do so this will be an ongoing cost.

Some offices charge for records. You can make some decisions in terms of the records you request within the system which can lower your outlay and you can also do what I did which was talk with some of the doctors we see most often and ask them to waive the fee their office charged. Hospitals were not willing to waive the fees, most of the doctors waived the fees without much, if any hesitation. While I might be able to accomplish this with the purchase of a scanner and hours and hours of making medical records request and then scanning those records into my computer myself, the reality for me was this wasn’t ever going to actually happen, even if I put the money out for a scanner, so I’d still be in paper hell. I have downloaded everything Medefile has collected and have a copy on my hard drive.


While I feel secure and comfortable with the network protocol, authentication system and other site security and access controls they have in place I get that I’m more than a tad on the geek side of life. I know many people are completely freaked out by security online and of course the constant stories of identity theft, online hacks that release our information to any number of evil predators I feel like Medefile has taken all precautions and I believe they really consider security is one of their top concerns. All that being said I’m the first to recognize it’s a comfort level thing.

Obviously I came down on the side of utilizing Medefile’s services. So far I honestly feel like I’ve gotten the better end of the deal. Digitizing records the volume of which Katherine produces annually is worth $129 easily for me. While I’m not sure it’s an application Medefile had in mind (at least not from reviewing the testimonials page) and I found out about the service in my dad’s AARP magazine, it certainly seems ideally suited to those of us who have to juggle information between numerous medical professionals.

Happy New Year!!

Dec 31, 2007 Author: Kyron | Filed under: General

The birth of a new year and a new blog! I am certain if you are like me you have mixed emotions over all that has transpired over the past year – some good, some bad, much struggle and strife, some milestones, some things you’d just as soon forget!

Well today as we get ready to ring a new year, I am “giving birth” to a new blog. I’m sure you’re like oh have mercy it’s the birthing analogy but I find it interesting how starting this blog has it’s similarities to what I realized I was going to deal with when I found out Katherine had special needs. OH DEAR LORD – Please help me! It’s a whole different world with a whole different language. You have little idea of what you are getting yourself into – with no definitive guidebook or roadmap for what to do next. Oh I know you can say that of giving birth to any child but as you well know if you’ve got a special needs child of your own…it’s really NOT that similar and it is one of the most deeply terrifying feelings ever. It’s winding up in a foreign land as Welcome to Holland by Emily Perl Kingsley so well illustrates. (For those of you who’ve never seen it you can check it out at the Our Kids website Archives) Maybe your child’s needs didn’t become apparent until they were a bit older. Talk about taking a sharp left turn. Kind of like a college music major picking up computers and writing – either way you get the idea.

My hope for this blog is not much different than my hope for either of my children. That I will raise it, grow it to be a real resource for parents of kids – whether those children were just born or are well on their way to adulthood, who have any number of special needs. I know this blog won’t be all things to all people – it can’t possibly be. I do believe that utilizing my personal experiences and information gathered over 16 years of rearing a physically and mentally disabled child, I can give other moms or dads information that speaks to them and to their situation. Maybe a review of a book or a retelling of one of many IEP meetings will give you a place to go – or a place to avoid! icon smile Happy New Year!! Hopefully you will all join me in the journey.

Recent Comments