CKSN UPDATE for April 1, 2004		ABC for Health, Inc.


SPECIAL ANNOUNCEMENT – In recognition of Cover the Uninsured Week, you are invited to join us on May 10 at the State Capitol in Madison for the joint Covering Kids with Special Needs and Covering Kids and Families annual statewide meeting.  A noontime highlight will feature Joanne Rica with the AFL-CIO, Al Jacobs with the WEA Trust, Representative Mark Miller and Dr. Paul Wertsch from the Wisconsin Medical Society in a debate of several plans for universal health coverage, accompanied by a complimentary lunch.  For more information and registration, please contact Maureen Fitzgerald at ABC for Health, Inc., maureenf@safetyweb.org

IN THIS ISSUE:

1. Case Tip:  Medicaid Deductibles and Prior Authorizations—Using a Clinical Review to Reduce Stress
2. Training Offered in Madison on SSI Disability Determination 
3. Improving Care for Children with ADHD 
4. White House Releases 2004 New Freedom Initiative Progress Report
5. Free Medication Resources
6. Whole Family Approach to Meds
7. New Bullying Curriculum Addresses Disabilities
8. New Freedom Initiative’s Call for Award Nominations
9. The Top 10 Requirements for Advocating Health Issues for Loved ones, Friends and You
10. HealthWatch Contacts
11. Suggestions for the Update?  Contact us!
12. Happy Birthday, ABC for Health!

1. CASE TIP:  MEDICAID DEDUCTIVLES AND PRIOR AUTHORIZATIONS – USING A CLINICAL REVIEW TO REDUCE STRESS

Three-year-old Stacy has hearing loss and needs a device called a Cochlear Implant to help her hear.  Stacy’s parents have researched their private health insurance plan and Cochlear Implants are not a covered device.  The implant will cost the family $65,000.  They cannot afford to pay for this cost on their own.  The parents apply for Medicaid under the Healthy Start program for Stacy.  Stacy is approved for Medicaid, but with a $10,000 deductible over a six-month period since the family is over the Medicaid income limits.  The deductible will not be met until they actually incur the cost of the Cochlear Implant.  A Prior Authorization cannot be submitted until the deductible has been met. Stacy’s parents are nervous about incurring $65,000 without some evidence that Medicaid will consider covering some of the cost (the parents would be responsible for the $10,000 deductible and then Medicaid would cover the remainder of the $65,000 cost).  
There is an option for families facing this situation.  The family can obtain a “clinical review”.  This can be accomplished by having the provider’s office fax the clinical information for the procedure to Dr. Richard Carr, the Chief Medical Officer for Wisconsin Medicaid at 608-267-3380 (fax).  Dr. Carr will review the clinical information and opine as to the probability of Medicaid paying for the service.  Dr. Carr will get back to the family with his opinion in 1-2 days. This way the family can get some evidence as to whether they should go through with a very expensive procedure (such as a Cochlear Implant).  Remember though, the clinical review by Dr Carr is not a guarantee of coverage.

2. TRAINING OFFERED IN MADISON ON SSI DISABILITY DETERMINATION

On Monday, May 3, in conjunction with the Dane County HealthWatch Meeting there will be a training session on the Disability Determination Process for Social Securing.  This training will familiarize participants with the disability determination process for adults (useful for youth soon to transition to the adult system!) and identifies key tools and approaches to use in helping individuals put together an application which fully and accurately represents their disability. 

The training (with lunch included) will run from 11 am until 1 pm, and will be preceded by a HealthWatch meeting from 9 am until 11 am.  The meeting and training will be held at the South Madison Community Health Center (Harambee Center), located at 2202 South Park Street in Madison.  Please RSVP to maureenf@safetyweb.org  by April 30, 2004 if you would like to attend.

3. IMPROVING  CARE FOR CHILDREN WITH ADHD 

On average, at least one child in every American classroom needs help for attention-deficit and hyperactivity disorder (ADHD). The National Initiative for Children's Healthcare Quality offers best practices for treating children with ADHD, and recommendations for health providers to work with families, schools and communities to provide comprehensive services to children with ADHD. 
http://www.nichq.org

4. WHITE HOUSE RELEASES 2004 NEW FREEDOM INITIATIVE PROGRESS REPORT

The President's New Freedom Initiative 2004 Progress Report is now on-line at the White House Web site and can be accessed directly at www.whitehouse.gov\nf2004.

5. FREE MEDICATION RESOURCES

Many drug manufacturers have what’s called Patient Assistance Programs. These programs are designed to help those who can’t afford their medicines obtain them at no cost or low cost. The following web sites provide free information and application forms:
http://www.needymeds.com
http://www.rxassist.org 
http://www.rxhope.com/pap_selectdrug.asp
http://www.helpingpatients.org/ 

6. WHOLE FAMILY APPROACH TO MEDS

Connect for Kids sought advice from experts for families whose children or teenagers are diagnosed with serious depression. 
http://www.connectforkids.org/resources3139/resources_show.htm?doc_id=211133

7. NEW BULLYING CURRICULUM ADDRESSES DISABILITIES

Courtney came home from school crying—again. A quiet girl with a beautiful smile and a slight lisp, she hears taunts from the "popular" girls.

Karl has cerebral palsy. In silence, he nurses bruises inflicted by a classmate. Karl is afraid to tell anyone because his tormentor threatens harsher treatment if he does.

PACER Center's new innovative curriculum, "Is Your Child a Target of Bullying? Intervention Strategies for Parents of Children with Disabilities," addresses these and other types of bullying. An engaging and superbly produced resource, the curriculum is meant for professionals and parent leaders to present to parents at meetings, workshops, trainings, and myriad other occasions.
Using research-based practices, PACER developed the one-of-a-kind curriculum that offers common-sense information and encouragement to families whose children experience bullying. The curriculum's appealing design and easy-to-follow format attracts and holds attention while delivering important, useable information. The content: 
·         defines disability harassment and bullying, 
·         advises parents on how to talk with their child about bullying, 
·         teaches constructive ways a target can react to bullying, 
·         educates parents about laws and policies affecting bullying, and 
·         explains to them how to address bullying in individualized education programs (IEPs).

The curriculum is available from PACER for $15 in CD-ROM format or $165 with overhead transparencies and printed script. To order, contact PACER at (888) 248-0822 or visit www.pacer.org. 
8. NEW FREEDOM INITIATIVE’S CALL FOR AWARD NOMINATIONS

U.S. Department of Labor Secretary Elaine L. Chao has opened nominations for the New Freedom Initiative Award. This award will recognize nonprofits, small businesses, corporations, and people who have demonstrated exemplary and innovative efforts in furthering the employment and workplace environment for people with disabilities. Nominations are due May 21. http://www.dol.gov/opa/media/press/opa/OPA2004315.htm

9. THE TOP 10 REQUIREMENTS FOR ADVOCATING HELTH ISSUES FOR LOVED  ONES, FREINDS AND YOU
In today's complicated and detailed health care industry, it is becoming more and more important for consumers to be able to interact with their health care providers with confidence and open communication. These ten tips will provide you with a guideline for improving the quality of your care by becoming a savvy health care advocate for you, your family, your colleagues, and your friends. 
1. Seek medical referrals. 
Seek provider referrals from trusted friends, colleagues and family. Conduct an informational interview. Ask about their experience, learn the pros and cons and whether they would use them again. Most people are willing to boast about great experiences and share information about negative experiences. 
2. Second opinions are necessary. 
Medical professionals will differ in their diagnoses, and evaluation processes will vary according to education and training. Always seek a second, and if possible a third, medical opinion for significant diagnoses and/or surgeries. 
3. Bring along a trusted friend. 
Make sure your consultations are accompanied by a trusted third party whenever possible. An objective ear often "hears" what a nervous patient may not. These extra eyes, ears and voice can ask additional questions that the patient may not think about. They can also take notes for you so that the information shared and learned can be more easily retained. 
4. Conduct research. 
Searching for medical information to supplement what you may already know is a critical step in becoming a savvy health care advocate for you, your friends, and others. It often provides additional and updated information as to the latest techniques, experts in the fields and statistics. Conducting your own online research is relatively easy. Check medical libraries; ask for help at local bookstores and libraries. Inquire as to what organizations and support groups are available. Your local chamber of commerce and medical office may have additional information. An example: www.WebMD.com 
5. Develop a project management mindset. 
Accept early on that it is necessary and crucial to participate in the management of your health and the medical process. This is especially true when multiple medical providers are involved. Staffing is often short and medical institutions are hectic environments. Although most may feel that this shouldn't be the case, it is our responsibility to take charge of our life and health and assist in the management process. If you are unable to do so, ask a trusted friend. 
6. Keep a record of your findings, process, and results. 
Keep a simple notebook log on hand. This simple method helps to coordinate information, track visits and test results. Request regularly scheduled meetings for updates, especially when hospitalization is involved or long-term treatments. Find out who is the patient advocate or patient relations representative in each office or institution. These individuals can help in the coordination of meetings. 
7. Request a current copy of your medical records. 
Never forget that you have the right to view and receive a copy of your medical records. Requesting a copy of your records usually requires a nominal fee. It's worth paying for a set of records for future history and appointments. This is especially helpful when seeking additional appointments, opinions and multiple medical services at one time. These records along with a simple log will help empower you, keep you informed and help in the management of your health. 
8. Consider alternative health care as a choice. 
Consider seeking alternative health care modalities that can provide additional mind, body and spirit support and relief in the medical process. It's never too late to incorporate other holistic modalities. Some examples are Reiki, Massage, Healing touch, Acupuncture, Yoga, and Meditation. Religious and traditional counseling are additionally supportive. Always inform your physician what additional therapies you are using. 
9. Develop a great relationship with your health care providers. 
It's important to be comfortable with your physician and medical staff. How do they interact with you? Do they listen well? What's their follow-up like? Are you rushed? Can you speak openly? It should be fairly obvious that their actions convey compassion, patience, respect and that your health matters. 
10. Remember...you are the customer! 
Realize that you are the customer and that you deserve to be treated in a respectful and compassionate manner. There is a patient bill of rights, which governs what patients can expect. Each institution posts these rights, and as a patient or family member, you can receive a copy. Patient Relations and Patient Advocate departments within hospitals can provide support to patients and family members as well as often act in an intermediary fashion.
About the Submitter: 
This piece was originally submitted by Suzanne Marshall, United States Director of Springboard Consultancy, Executive Coach, Trainer, Facilitator, Speaker, who can be reached at suzanne@womenadvancingwomen.com, or visited on the web 
Copyright 2000-2004 CoachVille, LLC. May be distributed if full attribution is given and copyright notice is included.
10. HEALTHWATCH CONTACTS

If you are interested in joining your regional HealthWatch committee, or want more information about their work, please contact the following people:

Southern Region:  Barbara Katz, ABC for Health, Inc., 608.261.6939 ext 207, barbk@safetyweb.org 

Southeastern Region:  Brad Holman, Children’s Hospital of Wisconsin, 414.266.3189,
bholman@chw.org or Brad Montgomery, 414.449.4777, opwindows@aol.com

Northern Region:  Deb Blackstone, Family Resource Connection, 715.365.8030,
dblacks@shsmh.org

Northeastern Region:  Steve Gerczak, St. Vincent Hospital, 920.433.8154,
sgerczak@stvgb.org

Western Region:  Rose Marsh, Chippewa County Dept of Public Health, 1-800-400-3678, rmarsh@co.chippewa.wi.us

11. SUGGESTIONS OR TIPS FOR THE UPDATE?  CONTACT US!

We need your help to develop content and tips for our CKSN Update. Please let us know about your ideas or success stories.  Email your suggestions to barbk@safetyweb.org 

The CKSN Update is a bi-weekly electronic newsletter of the Covering Kids with Special Needs project that ABC for Health, Inc. is implementing with its partners, the Title V Children with Special Needs Regional Centers and Family Voices – Wisconsin.  If you would like to submit news and information in future CKSN Updates, please send it to the attention of Barbara Katz.  All submissions should be limited to 150 words.

ABC for Health is a Wisconsin-based, nonprofit public interest law firm dedicated to linking children and families, particularly those with special health care needs, to health care benefits and services.  ABC for Health’s mission is to provide information, advocacy tools, legal services and expert support needed to obtain, maintain and finance health care coverage and services. 


12. ABC FOR HEALTH IS TEN YEARS OLD!


Save the date!  ABC for Health will celebrate 10 years of advocacy and legal services on Thursday evening October 14, at the Great Hall of the Memorial Union in Madison   Please consider joining us to celebrate our 10th anniversary as Wisconsin’s premier public interest law firm dedicated to helping families secure adequate health care coverage and services!  Watch for more information on this event in the near future.  Thanks so much for your ongoing support.


Barbara Katz, moderator
Parent Consultant
ABC for Health, Inc.
608.261.6939 ext. 207
barbk@safetyweb.org