WRA Newsletter Archive WRA Newsletter, Summer 2003 |
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WRA
Newsletter Article 1
President’s Message:
Many of you are already aware of the significant changes currently occurring within State government. For those of you who haven’t heard about the changes, think of this as the opportunity you didn’t realize you were looking for!Since I work with the Department of Health and Family Services (DHFS), I am going to take this opportunity to share with you a little bit about the transition occurring within this department. As the state Medicaid agency, DHFS is responsible for administering not only funds necessary for health care services but is also responsible for administering the Medicaid waivers such as CIP, COP, Family Care, and Partnership to name just a few. So your next question might be, “What are Medicaid Home and Community-Based Waivers?” The State must apply to the Centers for Medicare and Medicaid Services (CMS), which is the federal entity responsible for overseeing the Medicaid and Medicare programs in this country, for a waiver. A waiver gives states the ability to “waive” certain Medicaid rules and provide services not normally covered under MA.
Wisconsin has several waivers, some have been in existence for quite a while and others are new to the landscape. Examples of some of the services covered under the waivers in Wisconsin include supported employment, adaptive and communication aids, case management, transportation and consumer-directed supports. The premise is to give citizens with disabilities the option to live and participate in the community rather than residing in a medical institution. If you are interested in learning more about the waivers, check out the CMS website at http://www.cms.hhs.gov.
Now, back to the re-structuring of DHFS. There is a new, substantial division within DHFS called the Division of Disability and Elder Services (DDES). This Division merges the former Division of Supportive Living (DSL), Division of Care and Treatment Facilities (DCTF), and the Center for Delivery Systems Development (CDSD) in the Office of the Strategic Finance.
I strongly encourage you to learn about the merger by the 2/20/2003 Press Release, "DHFS Reorganizes Services for Elderly and People with Disabilities”, on the DHFS website at http://www.dhfs.state.wi.us/News/PressReleases/2003/022003reorg.htm
As always, I want to thank you for your continued commitment to the individuals you serve. It is because of your hard work and dedication that now, more than ever, individuals with significant disabilities are able to live, work and fully participate in the communities of their choice. We’ve come a long way, but still have plenty of work ahead of us. Keep your mind open; be brave enough to try new and innovative practices, and above all else, respect and value consumer involvement and choice.
Submitted by: Cayte Anderson, 2003 WRA President
| "Be courageous. It's one of the only places left uncrowded." - Anita Roddick |
WRA Newsletter Article 2
Disability Info Corner:
Duchenne Muscular Dystrophy
Duchenne Muscular Dystrophy (DMD) is a genetic disease that causes the slow deterioration of all the muscles in the body. This disorder is caused by a defect in a gene, which produces a protein called dystrophin. In people with Duchenne Muscular Dystrophy (DMD), this protein is not produced in the proper amount or not at all. Having less of this protein is what actually causes this disorder. This protein helps to repair the damage that occurs everyday in normal muscles. There is a similar disease called Becker Muscular Dystrophy that causes muscles to deteriorate because the body produces an abnormal form of the dystrophin protein.
Children with Duchenne Muscular Dystrophy (DMD) are normally diagnosed with the disorder around age 3 or 5 and usually begin using a wheelchair between ages 8 and 10. Wheelchair use can cause scoliosis and could require surgery that wires metal rods along the spine to straighten it. Because of this and other problems, children are encouraged to walk as long as they can. Many will begin having problems with the heart or lungs in the teen years. People with this disease are tested for lung capacity and blood oxygen periodically, because decreased lung capacity can cause susceptibility to respiratory infections, pneumonia, or respiratory failure. Heart weakness can also cause problems. Life span of someone with DMD is rarely beyond the age of the late twenties. This process of gradual muscle deterioration goes in spurts and occurs differently in each person.
Genetic Information and Inheritance:
Before going any further, it should be understood that a person with one X-chromosome and one Y-chromosome is male and someone with two X-chromosomes is female. Duchenne Muscular Dystrophy (DMD) is an X-linked recessive disease, which means that a defective gene in the X-chromosome causes the disease. Figure 1.1 shows the possibilities of offspring having the DMD defect with a DMD carrier mother and a normal father. X and Y-chromosomes are represented by X’s and Y’s with red X’s having a defective gene. Each square in the figure represents a different possibility of offspring having DMD. In people who inherent a defective X-chromosome from their mother, males have DMD and females are carriers of DMD, (squares 4 and 2 respectively). Being a carrier means they can pass the defective X-chromosome on to their children without showing symptoms themselves. Females are carriers because their normal X-chromosome takes over, but in males, the Y-chromosome cannot take over for the defective X. Rarely a female carrier will show symptoms of DMD, because the healthy X-chromosome doesn’t take over for some reason. Sometimes a child can develop DMD without their parents having a defective X-chromosome, because of a mutation.
Online References:
For information on Duchenne Muscular Dystrophy:
http://www.mdausa.org/disease/dmd.html
For information on 9 Muscular Dystrophy disorders and over 40 Neuromuscular Diseases supported by the Muscular Dystrophy Association: http://www.mdausa.org/disease
Submitted by: Timothy A. Carey, WRA Web Master
| "Don’t let what you cannot do interfere with what you can do" -- Timothy A. Carey |
| A bumper stick seen recently - Those who have abandoned their own dreams will try to convince others to give up on their dreams. |
WRA Newsletter Article 3
Legislative News and Views:
THINGS ARE HEATING UP IN WASHINGTON! A bill to reauthorize The Workforce Investment Act (WIA) has already passed through the House, and is now headed toward the Senate, with a final vote anticipated after their August recess. Vocational Rehabilitation funding is part of this act. The current bill, H.R. 1261, is flawed, and the National Rehabilitation Association encouraged house representatives to vote against this bill in its current form. Wisconsin congressional representatives voted mostly along party lines against (democrats) or for the bill (republicans). One republican, Rep. James Sensenbrenner, also voted against the bill. The vote was close, 220 for and 204 against.One problem with HR 1261 is that it reneges on a promise by Congress to safeguard the separate funding stream of the Public VR Program, and creates block grants to the states. There is already an amendment attached to protect VR funding from being completely pillaged to fund the One-Stop Centers. However, it remains to be seen how much protection this bill, in its current form, will give to VR funds from governors who are seeking to balance budgets…
Four members of the Wisconsin Rehabilitation Association attended the annual Governmental Affairs Seminar in Washington D.C. in early March: Dennis Carriere. Chari Haglin, Debra Hagen-Foley and Jim Hill. Our delegation represented the public, private and university sectors. We visited the offices of both our senators, and 5 congressional offices to deliver position statements from both NRA and WRA.
We went to advocate for substantially increased funding for rehabilitation and related services, but were told, in no uncertain terms, that this will not happen. It is more likely that we are in a “protect your turf, damage control” mode. Federal budget priorities are 1. Military spending and 2. Homeland security. Everyone else, get in line.
Our congressional representatives also told us that while it was nice to see us, they need to hear more from constituents. Your opinion and vote does count, especially when we have the above mentioned budget priorities, upcoming tax cuts, and a need to further prioritize federal spending.
Direct personal experiences with waiting lists, service needs, and past successes are all fertile topics for legislators who need to get a feel for how to vote.
Your best contacts at this point regarding reauthorization of the Rehabilitation Act and WIA are to contact Senators Feingold and Kohl. Ask them to support FULL, dedicated and increased funding for vocational rehabilitation services. Draw on your own experiences. It is best to either email, Fax, or call. (letters are very slow in arriving). Here is the contact information:
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Submitted by Jim Hill, WRA Legislative chair
WRA Newsletter Article 4
Motivation
How do people with disabilities stay motivated to achieve their goals, when
at every turn there seems to be a new obstacle? The following story is simple,
but a great metaphor for how to be successful in life. One day a farmer's donkey fell into an abandoned well. The animal cried
piteously for hours as the farmer tried to figure out what to do. Finally,
he decided the animal was old and the well needed to be covered up anyway. So it just wasn't worth it to save the donkey. He invited all his neighbors to come over and help him. They each grabbed a shovel and began to shovel dirt into the well. Realizing what was happening the donkey at first cried and wailed horribly. Then, a few shovels full later, he quieted down completely. The farmer peered down into the well, and was astounded by what he saw. With every shovel full of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up on the new layer of dirt. As the farmer's neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, the donkey stepped up over the edge of the well and trotted off, to the shock and astonishment of all the neighbors.
I think we can all take a lesson from this donkey. Life is going to shovel dirt on you, all kinds of dirt, and people with disabilities often times get more than their share. The trick to getting out of the well is to not let it bury you, but to shake it off and take a step up. Each of our troubles is a stepping-stone. We can get out of the deepest wells by just not stopping - never giving up! Shake it off and take a step up! Never settle for less than you deserve, advocate and educate with every step you take, and show that world what you are capable of.
Submitted by Karol Buckingham, 2003 WRA Vice-President
| I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do. -- Helen Keller |
WRA Newsletter Article 5
Upcoming Events:
2003 NRA Annual Training Conference and Exhibits"Building the Rehabilitation Future: Partnerships, Participation, and Paradigms" October 2-5, 2003, Opryland Hotel, Nashville, TN
Contact : Toll free 1-888-258-4295, local (703) 836-0850, fax (703) 836-0848, TDD (703) 836-0849, or email: info@nationalrehab.org
NRA Conference Rate is $119 single/double plus tax until August 29, 2003. For hotel reservations call 615-883-2211 (Mention NRA Conference) Opryland Hotel, 2800 Opryland Drive, Nashville, TN 37214 - www.opryland.com
Join the National Rehabilitation Association and take advantage of exclusive member benefits
From information-packed educational programs and powerful government advocacy to discount insurance, National Rehabilitation Association membership will keep you informed, involved and in focus. Join today at http://www.nationalrehab.org/website/index.html
Joining NRA is the first step to becoming more involved with your own local state organization. As a Wisconsin member of NRA, you are automatically a member of the Wisconsin Rehabilitation Association (WRA). As a member of WRA, you are eligible to run for a board position.
| Did you know????? If you are elected to a position on the Wisconsin Rehabilitation Association Board, Wisconsin Rehabilitation Counseling Association Board or the Southwestern Wisconsin Rehabilitation Association Board,Job Placement and Development Association Board, you will receive a rebate of ½ of your National Association dues? |
Nominations for Board positions will be should be submitted to Cayte Anderson by October 1st.
Email(Work) :anderca1@dhfs.state.wi.us or Telephone (Work): 608-266-2126
Ballots will be sent out around November 1st. You can nominate some one else or submit your own name as a nominee. Each nomination should include NRA membership number, short bio and statement regarding the nominee’s willingness to serve.
Check out who in currently serving on the WRA Board by going to http://www.wra-org.org and in clicking on the button titled WRA Board Members The WRA Newsletter is available by both paper and at the WRA website during this transition year of 2003. It will be available primarily at the WRA website next year and by paper upon request. That website again is:
http://www.wra-org.org
| WRA Newsletter, Summer 2003 |
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