During Autism Awareness Month I have invited some of my friends who know autism far better than I do to post on my blog. The following is an interview with my friend and fellow Partners in Policymaking graduate, Julie Buick. Julie graciously spent a couple of hours this week regaling me with stories about herself, her family, her thoughts on Autism and the importance of community.
Tell us about yourself and your family:
I'm a mom. A wife, a mom and an advocate. I have 3 children: a 13 year old daughter, and 2 sons who are 9 and nearly 6 years old.
And we can't forget my husband, Bill. He's my rock! We have been together for 19 years!
Autism is the fastest growing developmental disability with--as yet--no known cause or cure. It affects 1 in 150 children. A new case is diagnosed every 20 minutes. This year there will be more children diagnosed with autism than AIDS, diabetes and cancer combined.
What do you want folks to know about?
I think the most important thing is the community and belonging. We want a community that will accept and welcome our boys and treat them like we do. We aren't going to be around forever--the community needs to be ready.
We work toward inclusion for both of our boys. They go to different schools and they are progressing toward inclusion. Last year my older son was in a situation where his classroom was "in" a school, but not part of it at all. This year is different. This year his classroom "belongs" to the school--kids say "hi" and spend time with him. He is so much more excited to be there--he walks taller. His team and their faith in him make all the difference.
I do a lot to help get the community ready--for my kids, and for all kids with all disabilities. I give talks to teachers and schools and at local colleges about disability awareness and autism. I talk about individualizing, having a can-do attitude. If I can just educate people I can take the fear out of the unknown.
I tell them that for us autism is just a label for services. We don't deal with autism at home. We just accept our kids for who they are.
I think accepting them is key. People always ask me how I cope and I tell them I don't. It's not "coping" if you accept your children. We definitely do different things for our kids than we would if they didn't have autism but it's because 'Bobby needs this' or 'Billy likes that,' or ' Katherine wants something else.' Every parent and every child wants or needs different things in any family. That isn't "coping," it's parenting!
I don't have trouble with "coping." I do have trouble finding enough time to do all the things I want to, but everyone says that!
What is the role of advocacy?
Advocacy is crucial--and it isn't a coping skill either! Advocacy is not a choice--it is the way you get everything, change everything, and make things work.
All parents advocate for their kids at some point. It's just what you do,
I know you always have lots going on--what are you working on lately?
You have to understand that I do take on a lot because I CAN. Not everyone can or wants to do all this depending on their life and their child, what's going on at home, etc.
I have great support at home--my husband enjoys being at home with the kids and supports my efforts.
I worked overnights for years so I would be home during the days for meetings and such. I still work for the same agency, but now I work at the Pieters Family Life Center which is a community center (totally inclusive!) In my job I get to run SibShops, a Spectrum Family Support Group and more.
Outside of work, I am: • a presenter with The Advocacy Center providing disAbility awareness presentations in our community through the speakers bureau, • Vice President of Operations for UNYFEAT (Upstate New York for Effective Autism Treatment which is the largest not-for-profit-501(c)3 in the Rochester area) Right now we are working to bring the nationally known organization Lose the Training Wheels to Rochester for a clinic this summer. • Autism Speaks Chapter Advocacy Chair for Upstate NY region is yet another hat that I wear and a very important one. My Autism Speaks hat is the one which helps get much needed money for research. • Training for a 10k run!
Autism costs our nation 90 billion a year and that is expected to double within the next decade. Our communities and our nation cannot afford NOT to know about Autism.
We need to raise awareness, find answers through research and provide appropriate educational services to teach life skills so that our kids become productive, healthy, happy adults, working, playing and living in our communities.
Now is the time to make a difference!
Any closing words?
I love this quote:
Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead
This is a picture of my daughter reaching into the happy, red raffle bowl of joy. And the winner is "gleichs." You will be receiving an e-mail from me in a minute and I will mail you your very own signed copy of The Memory Keeper's Daughter!
Did anyone see the movie The Memory Keeper's Daughter on Saturday? The movie is based on the book by Kim Edwards. We were busy on Saturday night, but I really wanted to see it because I really enjoyed the book.
The book is an interesting story about Down syndrome, but I think it is just as much about having to have complete control in life--sometimes things you didn't expect (even things you always thought were bad) lead to wonderful places...
I have a signed copy of the book that I got at the National Down Syndrome Congress Conference last summer (I have another copy so the signed copy is brand new.) If you leave a comment before NOON on Friday 4/18/08 I will enter your name in a drawing and will send you the book (US entries only this time, please--not up to international shipping this week!)
Since I do not have a connection with Autism myself I offered my friends who know more about Autism than I do the chance to guest-blog here. Monica is the parent of an awesome son with Autism and a fellow Partners in Policymaking grad (from my class, actually!) She is also the host of Disability News and Views Radio. This article of hers was originally published by Autism Today. PS: The house in this picture is for sale so if you are looking to move to Bufflo, NY leave a comment!
Finances an Added Burden for the Disabled and Their Families By Monica S. Moshenko Power Advocates, Inc.
For those of you who have a child with a disability, or are an adult with a disability, finances play an integral role in the services and supports that are needed. There were times in the last few years, when I made choices to pay for a therapy my son needed, instead of paying the phone bill or car payment because the health insurance company often limits the frequency or doesn't even cover it.
I have known far too many families who had to sacrifice so much to ensure that their child receives the interventions and attention they so desperately require. Some parents have had to refinance their homes and often go without the many "extras" that many others seem to have- the second car, vacations, and even going out to restaurants, to pay for ongoing medical costs which usually aren't covered by typical HMO's. For the parent or adult who doesn't have any health insurance, there are increased challenges and stresses accompanied by this problem, making life extremely difficult. There are resources that parents of disabled children and disabled adults can apply for in New York State, as well as national resources I want to provide for you.
One program called the "Medicaid HCB Waiver Program" which allows States to take Medicaid funds that were previously only available to institutions, and apply them to community and home-based programs.
According to the U.S. Dept. of Health and Human Services, "Medicaid's home and community-based services waiver program affords States the flexibility to develop and implement creative alternatives to institutionalizing Medicaid-eligible individuals." Many individuals can be cared for in their homes and communities, preserving their independence and ties to family, and friends, at a cost no higher than that of institutional care. When these programs are provided, the individual also becomes a contributing member of the community, thereby enriching all of our lives.
Some of the services that maybe provided without prior approval of the Federal government through this program include: Case Management Services, Homemaker Services, Home Health Aide Services, Personal Care Services, Adult Day Health Habilitation and Respite Care Services.
Other services which maybe provided with prior approval include: Transportation, In-Home Support, Meal Services, Special Communication, Minor Home Modifications, and Adult Day Care.
To apply for the HCB Medicaid Waiver, you need to have documented information about the disability, along with information of how the disability affects the person's daily living. Your income is not a factor when applying for the HCB waiver.
Waiver services may be provided to the elderly and disabled, the physically disabled, the developmentally disabled and mentally ill. Waivers may also be targeted to individuals with a specific illness or condition, such as technology-dependent children or individuals with AIDS.
Under the waiver program, States can make home and community based services available to individuals who would otherwise qualify for Medicaid only if they were in an out of home setting.
Contact a Caseworker from an agency such as People Inc. or Heritage Centers (see the list of resources which follow) to begin the application process, which can take several months. Once the application is completed, it is submitted to a review committee at the WNY DDSO. When a decision is made, a letter is then sent to the applicant and the agency that you are working with. If you are denied, you can always apply again, perhaps submitting more specific information or you can request a Fair Hearing for further review of the application.
If you have an adult child with a disability, they may be eligible for either SSI (Supplemental Security Income), or SSDI (Social Security Disability Insurance) regardless of your income or assets. Both of these programs provide money to people with disabilities who aren't capable of "substantial gainful activity" or SGA. If a physical or mental impairment prevents your adult child from doing any job that will enable him or her to independently earn $500 or more per month, he or she may be eligible for either SSI or SSDI if other requirements of the program are also met. § SSI requires that in addition to being disabled and incapable of SGA a person must also be poor. SSI sets limits on the amount of money one can earn in a month (countable income) and on the value of money or property owned (countable resources). It is important to note that once a child reaches 18 years of age, his or her parents' income and resources are not counted for SSI eligibility.
SSDI is only available to people (including their dependents) who have paid into the Social Security system by working a required amount of time. Dependent adult children are eligible for benefits under their parents' work record. Dependent adult children are defined as becoming disabled prior to the age of 22, single, and incapable of substantial gainful activity. If the parent fulfilled the required SSDI work time and then dies, retires, or becomes disabled, a dependent adult child will receive cash benefits based on that parent's earnings. It is important to note that the child does not need to be poor to receive the cash benefits, nor does the child have to live at home. (Excerpted from "Adult Child Benefits: Social Security 101," by Theresa Varnet, Exceptional Parent, September 1997)
There are a variety of work incentive programs for individuals with disabilities who wish to work without immediately jeopardizing their SSI/SSDI benefits. The Work Incentives Improvement Act (WIIA), introduced in Congress on January 28, 1999, would allow beneficiaries of SSI and SSDI to work without losing their Medicaid or Medicare benefits. More information about the details of these programs, eligibility requirements and work incentives can be obtained from a variety of sources including the Social Security Administration at 1-800-772-1213 (TDD: 1-800-325-0778) and the NYS Dept. of Labor at (518) 485-6176 or email email@example.com (New York Works: Self-Sufficiency through Employment Initiatives). This program is being offered in Buffalo.
I have listed local and national agencies that provide information, support and assistance. Local churches should be providing some assistance to the disabled as well (i.e. food, clothing, counseling, financial)
NATIONAL RESOURCES The Brass Ring provides grants to fulfill the dreams of children who suffer from a life threatening or terminal illness. Phone 1-800-666-WISH Website: www.worldramp.net/brassring/
Disability Funding News is a national newsletter covering federal and private funding for people with disabilities. Phone 1-800-666-6380 Website: www.cdpublications.com/funding/dfn.htm
In His Name Ministries, an interfaith, non-profit charitable organization that addresses the news of the disabled, elderly and the struggling single. Phone 1-405- 706-6295 Website: www.inhisname.org/ email firstname.lastname@example.org organization that addresses the financial needs of the disabled, elderly, and struggling single
The Make-A-Wish Foundation grants wishes to children under the age of twelve with life threatening illnesses. Phone 1-800-722-9474, Website: www.wish.org, email MAWFA@wish.org
(Correction: They actually grant wishes to children between the age of 2-1/2 and 18 with life-threatening medical conditions.)
National Rehabilitation Information Center (NARIC) provides referrals for persons with disabilities to organizations that may financially assist them in a variety of ways (i.e. education). Phone 1-800-346-2742 Website: www.naric.com
National Organization of Social Security Claimants Representatives (NOSSCR) is an association of attorneys and paralegals who represent Social Security and Supplemental Security Income claimants. Phone 1-800-431-2804, Website: www.nosscr.org. and email email@example.com
Physician's Disability Services, Inc. is a publishing company that helps people with disabilities prove their Social Security disabililty claims. Phone 1-410-431-5279 Website: www.disabilityfacts.com and email firstname.lastname@example.org The Sunshine Foundation grants wishes to chronically, and terminally ill, disabled and physically abused children ages 2 ½ to 22. Phone 1-941-424-4188 Website: www.sunshinefoundation.org, email email@example.com
The latest Disability Blog Carnival is up over at Reimer Reason. It's topic is The Hardest Part--from the Cold Play song of the same title. Check it out for a wide variety of interpretations and stories--and a lot of really good writing.
Whether your connection to the disability experience is personal or professional I think you will enjoy both the common ground and the distinct individuality you will find in these posts.
I went to Niagara University back when they had a huge undergraduate nursing program. One of the best things about being in nursing school was “clinical” (the time we spent working with patients applying things we’d learned in class), and one of the best things about NU was that you got to have clinical at a wide variety of facilities spread across Western NY.
I still remember dragging myself out of bed at quarter-of-five (20+ years later I still cannot call it 4:45 because it still sounds too close to 4:00am!), pull on my highly attractive uniform and stagger over to Clet Dining Hall (which is much fancier in these pictures than I remember it!) to eat breakfast and meet up with the people from my clinical group. From there we would carpool to our assigned facility.
We would arrive at the hospital before the day shift would begin, have a meeting with our clinical instructor, pin on our caps and work until mid-afternoon. Then we would have another meeting with our instructor and head back to campus, where on a good day I would fall into bed and sleep until supper time. (On a bad day I would have French!)
I learned a lot during my clinical rotations—about medicine, about people and about myself. It was great.
One year I was assigned 2 consecutive rotations at the same hospital. I don’t really remember what type of unit I was on for the first rotation, the second was a vascular surgery unit.
The first rotation was awful. The staff on that floor was sour, they were perpetually annoyed with us. They let us know each and every day that they just didn’t have time for student nurses. They taught us nothing, showed us nothing—and the unit itself was chaotic, disorganized and unpleasant. The staff and patients there were all miserable. The nurse manager was ineffectual: controlling and obnoxious to her staff and they, in turn, were rude to us. We would have been glad to do all the mundane, routine work like making beds and personal care for them. Our instructor was searching for things to teach us, we wrote endless careplans, but we got no hands-on experience whatsoever.
The second rotation was amazing. On that floor they put us to work. They gave us assignments, they asked us to do the routine and taught us how to do much more than that. They were nice to us, happy to see us. They gave our instructor lots of opportunities to teach us and often the staff taught us themselves—all day long people would ask us to observe or help them with something. And they were really nice. I can remember being in a room making a bed and having one of the staff nurses coming in and helping me make the other side.
The patients on that floor had really challenging health issues yet everyone there was upbeat and positive. It was a very challenging rotation with lots of meds and procedures and information to learn—and it was really fun!
My clinical group and I were amazed by the difference in the dynamic of those two floors. We spent nearly every car ride discussing it. We could not imagine what would make two units in the exact same hospital so different from each other.
Clinical conference was usually spent discussing patients and medical information, but over lunch one day someone mentioned the contrast between our experiences to our instructor.
While our morning meetings remained clinical in focus, our afternoon sessions became management seminars. She was a good teacher and asked lots of questions: Was one of the nurse managers smarter? (Not smarter, but definitely different,) Older or younger? (No.)Was it the staff on the floor? The patient mix? (Not really.) She gave us articles and books to read and kept the discussion going.
Eventually we came to the conclusion that—drumroll please—
LEADERSHIP CREATES CULTURE!!!! In fact, the primary role of leadership is to create culture.
Doesn’t seem like that big a revelation right now, but to a 20 year old kid who had always taken such things for granted, it was huge.
(We did learn more about management and leadership in other courses, but this was my introduction.)
So I graduated from college and I went to work in small facilities and large facilities, I’ve had a family and belonged to churches and book groups, I taught Sunday school for my children and volunteered in their schools, I became a disability advocate, taken classes, shopped, worked and lived in many different groupings since then.
Our maxim proves true every time:
LEADERSHIP CREATES CULTURE!
And this is why it matters that the United States has not ratified the UN Convention on the Rights of Persons with Disabilities which will be ratified in May. Our country through their absence is making the statement, as our leaders, that the 10% of our population with disabilities—a number that will be growing steadily as ‘America ages’—are not a priority.
Our leadership is not interested in sending a message that people with disabilities are valued in this country, or that being part of the international leadership on behalf the 650 million people with disabilities worldwide is of any importance or interest.
And does our culture reflect this? Take a look at the abuses, injustices, hostile laws, exclusive situations that have happened in this country—just since the beginning of this year….
A non-stance on disability rights by the leadership in our country is unacceptable.
It’s the IEP season and full servings of stress are being dished up with lots of conversations about kids, schools, teams and plans. In the midst of all this one of my friends, whose son is in 9th grade, asked me if my team had asked me “THE QUESTION” at my daughter’s meeting this week.
“THE QUESTION?” I asked.
Apparently every year for the past few years her son’s case manager has asked the same question at the beginning of every IEP meeting:
“Do you want your son to have competitive employment, supported employment or sheltered employment?”
She went on and told me lots of other stuff about her meeting, but this question really stuck with me.
I really hate this question.
Who wants to be part of a team where the coach starts the game by asking, “Should we aim for the bullseye, the target or the wall?”
Wouldn’t work for Wednesday night darts.
Doesn’t work in Wednesday morning IEP meetings either!
I hate the implication—at the beginning of team deliberations—that there are only 3 possible paths for her son. More than that, I hate that the 3 paths offered require her son to fit a system rather than requiring a system to fit her son.
Surely we can do better than this????
(Wheelie Catholic has written an interesting post about the value of consumer driven services. Check it out!)
(As much as I liked WHAM 13 News video about the use of aversives here in NY, this video had to go--I just couldn't imbed it so it wasn't automatically running... This video showed tiny concrete time-out rooms in a Rochester area school and showed documentation that the rooms were used for punishment rather than time-out for one child. The child had been moved there during a classroom incident and was there until the end of school. The next morning he was brought back there without an incident to "finish his time" according to the video.)
Above is the latest video about aversive therapies in NY State. I have written about this topic before (three articles in 2006 here, here, and here.) For me one of the most disturbing images in the whole video was the hallway full of time out rooms with decorated doors—to me this gives the message that the school just knows the kids are going to be bad—bad behavior is just a normal and expected part of the day there.
I know that people with some disorders struggle with safe and appropriate behavior, but I think schools and programs should be set up to convey the message “we expect things to improve” rather than “we expect things to deteriorate.” I found the image of all of those doors discouraging. (One of my friends pointed out that from the outside those rooms looked like fun places--she thought this was disingenuous...)
I have written about the fact that schools are the only agencies in NY that are allowed to employ aversive techniques to modify behavior. Parents who put their child in time-out for more than 3 hours in a closet lose custody in this state. Apparently solitary confinement is legal in prisons, but even there it is pretty strictly regulated.
I have written before about the power that professionals have to create the reality that is then punished, and the fact that having the aversive on hand to use keeps professionals from finding newer, better solutions.
It is time for NY to create a consistent ethic for the treatment of all of its citizens without exceptions.
Write to your legislators, write letters to the editor!
When I started blogging back in 2006 it was my plan to include book reviews in my writing (hence my title.) Well now, I am finally writing one! It appears that everyone in the blogosphere reads faster than I do—I got the book on Saturday (the day it came out) and there have been reviews popping up since Sunday…. I have to write this so I can read those—the pressure is intense!
I first ran across the writings of Jennifer Graf Groneberg in the blogosphere. Jennifer is a wife and the mother of three little boys: 4 year old Carter and 2 year old twins Bennett and Avery. Avery has Down syndrome. Well known in the blogosphere for her blog Pinwheels and her contributions to Parent Dish. ,
Road Map to Holland is a beautifully written memoir of the 2 years after the author’s twins were born. Embedded in the story of the consuming life of parenting babies and toddlers is the story of expanding a family and life-vision to embrace Avery’s diagnosis of Down syndrome.
Among the diapers, spoonfuls of rice cereal and trips to the park are the moments of struggle and the moments of success, the heartwarming responses of the neighborhood children and the heart-wrenching loss of friendship with 'a woman not named Cathy.' There are the inadvertent comparisons between Bennett who is developing typically and Avery who experiences delays—and the lessons learned about each child being on their own path. Woven into the story are the supports, resources and the books that serve as guides to living and thriving with Down syndrome.
For me this book was a delight.
The title is based on the wonderful essay “Welcome to Holland” by Emily Perl Kingsley which uses the analogy of changed travel plans to show that, while changed plans are disruptive and can be upsetting for a time, unplanned destinations have charms of their own. This essay was given to me by one of my friends while I was still in the hospital after my daughter who has Down syndrome was born.
My three children are 18, 16 and 14 today and reading this beautifully detailed story brought me right back to the years of parenting 3 kids under 4—especially poignant as my oldest prepares to graduate from high school.
I remember the exhaustion and the elation. I remember the reading—many of the titles mentioned in this book are on my own shelf (or were until I passed them on to other families.) I remember the worrying and the moments that assured me that I was right where I should be.
This book is a beautiful read for new parents of children with Down syndrome, it is also a touching reminder for parents of older children—each of our stories are different in the details, but connected at the core.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.