CKSN UPDATE for November 15, 2003		ABC for Health, Inc.


IN THIS ISSUE:

1. Case Tip:  Coverage for Speech Therapy
2. Seventh Circuit Court Upholds Long-Term Psych Care for Kids
3. AAP Out of School Suspension and Expulsion Policy Statement
4. Bright Futures:  Family Matters Newsletter Available
5. NIH Establishes Rare Diseases Clinical Research Network
6. Waisman Center Trainings
7. HealthWatch Committees



1.  CASE TIP:  COVERAGE FOR SPEECH THERAPY

Most health insurers will not cover speech therapy unless it is medically necessary.  Some denials indicate that the required speech therapy to address delays is educational in nature, not medical.  However, a child may need speech therapy in order to effectively communicate his or her medical needs. Therefore a denial of speech therapy based on medical necessity related to the perceived educational nature of the service may be effectively challenged by illustrating and promoting how the therapy addresses the child's medical needs. 
 
In order to challenge such a denial, speech therapy providers, in conjunction with parents, should fully document communication issues including the need to effectively communicate medical needs.  In situations where children have communication delays or challenges, an important strategy to employ is to provide supporting documentation of the child's needs related to communicating medical information to service providers and parents. For example, speech therapy may be framed as medically necessary to help a child to effectively communicate pain or other symptoms to promote better and more appropriate care.  This approach was used several years ago to convince an insurer to provide reimbursement for a touch-talker for a speech-challenged child.


2.  SEVENTH CIRCUIT COURT UPHOLDS LONG TERM PSYCH CARE FOR KIDS

(Source:  Jon Peacock, Wisconsin Council on Children and Families)

Last week the Seventh Circuit Court of Appeals affirmed the district court's decision in Collins v. Hamilton.  The case concerned whether Indiana was required to provide Medicaid coverage under EPSDT (aka "Health Check" in WI) for placements, recommended by screeners as needed, in long-term psychiatric residential treatment facilities (PRTF), or whether the State could meet its obligation under EPSDT by limiting coverage to the acute treatment options available in its inpatient psychiatric hospitals.  The Court required coverage of the PRTF, pursuant to section 1396d(r)(5).  (Source: National Health Law Project)

If you would like that paragraph translated from the legalese, here's a
short, Nov. 7 Assoc. Press article:

"A court says Indiana's Medicaid program must begin paying for some mentally ill children's long-term care in psychiatric hospitals. The Seventh U.S. Circuit Court of Appeals in Chicago made that ruling yesterday.

"It upheld a lower-court ruling that said the state was violating federal law by refusing to pay for such treatment.

"Previously, Indiana paid only for short stays by youths in psychiatric hospitals. It isn't clear how much that additional care will cost.

"The Indiana Association of Residential Child Care Agencies says long-term care for the most severely disabled youths typically costs as much as $110,000 a year per child.

"The Indiana Civil Liberties Union -- which filed the lawsuit -- says the ruling could apply to thousands of children."

3. AAP OUT OF SCHOOL SUSPENSION AND EXPULSION POLICY STATEMENT

The American Academy of Pediatrics (AAP) has issued a new policy statement (11/3/03) on the subject of school suspensions and expulsions. The statement, "Out-of-School Suspension and Expulsion," has recommendations for pediatricians and schools on how these punishments should be administered.  For information, go to:  
http://www.aap.org/advocacy/releases/novschool.htm

4. BRIGHT FUTURES: FAMILY MATTERS NEWSLETTER AVAILABLE

The latest edition of Family Voices' electronic newsletter, Bright Futures: Family Matters is now available.  It addresses topics of interest to families relating to raising healthy children, families, and communities. Here we include news for families of all children including children with special needs in the wider world of children.  To request an electronic copy of this newsletter, contact:
Lindsey Pope
Project Associate
Family Voices, Inc.
The Federation for Children with Special Needs
1135 Tremont St. Suite 420
Boston, MA 02120
phone 617-236-7210 x112
fax 617-572-2094
mailto:lpope@fcsn.org


www.familyvoices.org

www.brightfuturesforfamilies.org


5. NIH ESTABLISHES RARE DISEASES CLINICAL RESEARCH NETWORK

(From Family Voices - Wisconsin)

To address the challenges inherent in diagnosing and treating rare diseases, the National Institutes of Health (NIH) announced today the establishment of the Rare Diseases Clinical Research Network. With $51 million in grant funding over five years from several NIH components, the network will consist of seven Rare Diseases Clinical Research Centers (RDCRCs) and a Data and Technology Coordinating Center (DTCC).

"Funding research on rare diseases is a vital aspect of the NIH mission," said NIH Director, Elias A. Zerhouni, M.D. "By encouraging cooperative partnerships among the investigators at these centers, we hope to accelerate the development of diagnostics and treatments that will benefit these important patients."

The RDCRCs and the DTCC will be located at the following institutions:

    * Baylor College of Medicine, Houston, TX - Rare Disease Clinical Research Center for New Therapies and New Diagnostics - Dr. Arthur L. Beaudet

    * Boston University School of Medicine, Boston, MA - Vasculitis Clinical Research Network - Dr. Peter A. Merkel

    * Children's Hospital Medical Center, Cincinnati, OH - Rare Lung Diseases Clinical Research Network - Dr. Bruce C. Trapnell

    * Children's National Medical Center, Washington, DC - Rare Diseases Clinical Research Center for Urea Cycle Disorders - Dr. Mark L. Batshaw

    * The Cleveland Clinic Foundation, Cleveland, OH - Bone Marrow Failure Clinical Research Center - Dr. Jaroslaw P. Maciejewski

    * University of Rochester, Rochester, NY - Nervous System Channelopathies Pathogenesis and Treatment - Dr. Robert C. Griggs

    * Weill Medical College of Cornell University, New York, NY - The Natural History of Rare Genetic Steroid Disorders - Dr. Maria I. New

    * H. Lee Moffitt Cancer Center and Research Institute, University of South Florida, Tampa, FL - The Data and Technology Coordinating Center - Dr. Jeffrey P. Krischer

Approximately 25 million people in the United States are affected by an estimated 6,000 rare diseases or conditions. Diseases to be studied in the centers include: urea cycle disorders; Angelman's syndrome; Prader-Willi syndrome; Rett syndrome; periodic paralysis; non-dystrophic myotonic disorders; episodic ataxia; aplastic anemia; paroxysmal nocturnal hemoglobinuria; single lineage cytopenias, including granular lymphocyte leukemia, pure red cell aplasia, and myelodysplastic syndromes; vasculitis disorders; inborn defects in steroid hormone pathways; alpha-1 antitrypsin deficiency; lymphangioleiomyomatosis; pulmonary alveolar proteinosis; and hereditary idiopathic pulmonary fibrosis.

"Because of the small number of affected patients in any one location, rare disease research requires the collaboration of scientists from multiple disciplines and the capacity to share access to geographically distributed national research resources and patient populations," said Judith L. Vaitukaitis, M.D., director of the National Center for Research Resources (NCRR), one of the NIH funding components. "With a collaborative approach, the network will focus on identifying biomarkers for disease risk, disease severity and activity, and clinical outcome, while encouraging development of new approaches to the diagnosis, prevention, and treatment of rare diseases."

"The network will facilitate increased collaboration and data sharing between investigators and patient support groups working to improve the lives of those affected by these diseases and potentially prevent or eliminate these diseases in the future," said Stephen Groft, Pharm.D., director of NIH's Office of Rare Diseases. "In addition, knowledge about rare diseases may offer leads for scientific advancement in other rare diseases and in more common diseases."

Each RDCRC will utilize the resources available at the General Clinical Research Centers - 82 facilities distributed across the United States that provide clinical investigators with specialized research environments and specially trained research personnel. Supported by NCRR, the facilities include nursing staff, research subject advocates, and various core technologies, including sophisticated laboratories, nutrition staff, and imaging facilities.

The creation of the network responds to the Rare Disease Act of 2002, which directed NIH to support "regional centers of excellence for clinical research into, training in, and demonstration of diagnostic, prevention, control, and treatment methods for rare diseases." The term "rare (or orphan) disease," as defined in the Orphan Drug Act, is a condition affecting fewer than 200,000 in the United States or a disease with a greater prevalence but for which no reasonable expectation exists that the costs of developing or distributing a drug can be recovered from the sale of the drug in the United States.
*The Rare Diseases Clinical Research Network is funded by the Office of Rare Diseases, National Center for Research Resources, National Institute of Child Health and Human Development, National Institute of Neurological Disorders and Stroke, National Institute of Arthritis and Musculoskeletal and Skin Diseases, and National Institute of Diabetes and Digestive and Kidney Diseases, all components of NIH, an agency of the Department of Health and Human Services.  

For more information, contact the National Organization for Rare Diseases at: www.rarediseases.org

6. WAISMAN CENTER TRAININGS
 
The following trainings are being offered by the Waisman Center in Madison during the next few weeks.  Pre-registration is required for all trainings and conferences, and agencies will be billed after the training unless otherwise noted. 

Seizures - Recognition and Safety -Nancy Shook, RN
Thursday, November 20: 9:30am-12pm        COST: $10 Dane Co./$20 non-Dane Co.
Learn to recognize different types of seizures and how to provide appropriate support for individuals who experience them. This class provides basic information about seizures, diagnostic procedures, record keeping, medications, treatments, and safety. 

Supporting Offenders with Developmental Disabilities: Working with the Criminal Justice System - Axel Junker & Mary Mezera
Friday, November 21: 9am, -12pm                 COST: $10 Dane Co./$20 non-Dane Co.        
Individuals with developmental disabilities and the people who support them very rarely come in contact with the criminal justice system. However, just like everybody else, people with disabilities sometimes become the victims or perpetrators of crimes. Following the presentation of actual case scenarios, this session will: 
- give a brief introduction to the criminal justice process as it occurs in Dane County,
- describe people and programs encountered in that process and how to work with them effectively.

 Mental Illness and Developmental Disabilities: Diagnostic Dilemmas, Treatment Strategies, and Use of Medications - Nancy Shook, RN
Monday, November 24: 9:30am-12: 30pm         COST: $10 Dane Co./$20 non-Dane Co.
This class will cover basic information about mental illnesses and how they are diagnosed, summarize different treatment strategies and medications that are used, and discuss other important issues and concerns for people supporting individuals with both developmental disabilities and mental illness. Learn about the DSM-IV, psychotropic medications, and what side effects need monitoring. 

Retaining Financial and Health Care Benefits While Working - Bob Monahan, Joe Entwisle & Micheal Muelemans
Monday, December 1: 9am-12pm                  COST: Free
This course will not only provide a brief overview of Social Security and MA benefits, but also include information on the new Ticket to Work Program, as well as practical advice on how to retain your financial and health care benefits while working.


Community Training and Consultation
122 E. Olin Ave. Suite 100
Madison, WI 53713
Phone: 608/265-9440
Fax: 608/263-4681
email: comm.training@waisman.wisc.edu
 



7.	HEALTHWATCH COMMITTEES

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

SUGGESTIONS OR TIPS FOR THE UPDATE?

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.

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