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Volume 16, Issue 3
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Spring 2004 |
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| published quarterly by: The New Hampshire Challenge, Inc. P.O. Box 579, Dover, NH 03821-0579 |
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| In This Issue |
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| The column "Ask Jan" will be a regular feature in The Challenge. For those (few) of you who don't already know Jan Larsen, she reveals a little about herself and how she came to be such an authority on so many issues: |
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I can't remember when it started. For at least the last 13 years, anyone who has a question at the Moore Center where I work has been told, "Ask Jan."
I've had parents who called me a walking encyclopedia. I just never thought my knowledge of benefits, I.E.P's, guardianship, or how different systems connect was anything unusual. Recently, I have realized that my ability to remember a lot of information about a particular subject may be genetic.
My mother at eighty can tell you the prices of almost every supermarket product, even ones she doesn't buy! When I walk through a store with her, she'll say, "That's a good buy, its six cents more at Shaw's!"
She's also the family historian. She can tell you everyone's birthday and how even the most distant relatives are related.
My daughter has the same kind of memory for anything and everything about the Civil War and the English monarchy going back hundreds of years. She will often ask, "Guess whose birthday today is? It's Great Archduke so and so's."
After being around family members with such spectacular memories, my ability to explain SSI, SSDI, Medicaid and Medicare doesn't seem that remarkable.
My daughter Christine (yes, the one with the fantastic memory) is the reason I am in this field. When she went off to kindergarten with all the other kids her age, I was told "Take her home. We don't take kids like her." Being extremely hyperactive just didn't seem like a good enough reason for the school to decide she wasn't able to be educated.
Many of the parents of today's school age children don't know how children were treated before the Federal laws were passed. Each State had its own State Law, describing who would be educated. And when there were special education programs, they were housed in closets, or as far away from the "normal kids" as possible.
Even when Christy was allowed to go to public school, she was frequently sent home because the teacher, who didn't have any training, couldn't handle her. She was finally sent to a class for kids with behavior disorders, where she learned new and more disruptable behaviors. Concepts like inclusion didn't exist.
As Christy grew older, I began to wonder what she might do as an adult. While Chris has a great memory for some subjects, others like math completely elude her. Counting change or understanding how much money she needs to buy an item are still difficult concepts for her.
So I became interested in vocational programs, even going to work for one. I don't necessarily recommend this, but I did learn a lot. As a job developer, I not only learned about work options, I learned how work affects State and Federal benefits.
Parents and advocates believed individuals with disabilities could and should be employed. It has taken a while for the rules governing benefits to catch up to the concept that a person can be disabled and be able to work.
In fact, the program under which adults now apply for a State cash benefit and Medicaid coverage is still called Aid for the Permanently and Totally Disabled or A.P.T.D. I hate to explain what the acronym stands for. It's only been a short while that an individual can work and pay a monthly premium for Medicaid coverage. Many individuals with disabilities need services that private or company insurance won't cover, such as personal care for someone who uses a wheelchair. In the past, these individuals would limit the amount of pay or the amount of hours they worked in order to keep their benefits.
Even the concept of Family Support, so expected now, didn't exist. I was so upset with how my family was treated, that I wanted to get a Master's degree in Social Work so I could tell families that their experiences didn't make them dysfunctional. I had been told that my family was! I thought we functioned pretty well. Any family who'd survived all the crises ours had, and still coped, ought to get an award, not a label.
Luckily for me, New Hampshire passed Family Support legislation and I became the Moore Center's Family Support Coordinator. There were twelve of us, one for each region. It makes my heart proud that New Hampshire was a pioneer in the Family Support movement. Family Support is now a large department at The Moore Center, open to all 800 families who live in our region.
So the knowledge I've gained over the last 30 years allows me to make life a little easier for families. I can explain how our State provides services. I can decipher confusing acronyms. I can make benefits rules a little easier to understand. I'm not the only one who knows what I know, but I am able to make the information understandable. Once again, I have my daughter Christy to thank for that.
Christy has a very difficult time understanding and processing language, so for all of her life I've been explaining complex concepts to her in terms she can comprehend. I've become really good at what I call "Christy language." Whenever I speak to a parent (or professional) who is new to whatever program I'm describing, I think about someone learning a new language. And believe me, it's not an easy one to learn.
I'm thrilled that with permission from the Moore Center and the help of the New Hampshire Challenge, I'll have the opportunity to answer questions from as many of the Challenge's readers as can reach us, either by letter or email.
I do want to stress that I will be giving information, not advice. I will endeavor to be as accurate as I can, and will give references to the source of the information provided, along with the names (with their permission) of those who may be of help.
It is ultimately up to the reader, however, to assume responsibility for any choices made as a result of the information provided. The New Hampshire Challenge, the Moore Center and I assume no legal liability for any inadvertent misinformation or for the result of any inadvertent misinformation that may be given.
It is my sincere hope that the "Ask Jan" column will be a resource for families who sometimes don't get what they need because they don't know to ask or how to ask. From time to time, I will also put information into print in a "You didn't ask but I think you need to know format." I hope you are as excited by this as I am! |
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