Family to Family Links

As part of our Family to Family Health Care Information Center,
we are providing information related to the issues
of health care and children with special health care needs.

Below is our most recent listing of website links that we have
found valuable and hope that they will be of benefit to others.

Archive of Previous Links

New Jersey's Family to Family
Health Information and Resource Center @ SPAN

Links Digest November 21, 2005

Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

http://www.fahamu.org/WFCEng/sitemap.html - advocacy through writing. This site explores the medium of written communication in advocacy

file:///C:/WINDOWS/Temporary%20Internet%20Files/Content.IE5/11K0OZSD/256,1,HOW HOW TO BE A GOOD ADVOCATE – power point on being a good advocate

http://www.php.com/include/agency/show_list.php?where_ServicesID=3 - National Listing of advocacy groups throughout the USA

2. Financing issues – health insurance and other ways to finance the costs of needed services (including Grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

http://pediatrics.aappublications.org/cgi/content/abstract/116/5/1162?etoc. - Association between underinsurance and access to care among children with special health care needs in the United States .

http://www.rileyhospital.org/document.jsp?locid=158 - working with your insurance company

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

http://www.vesid.nysed.gov/specialed/publications/policy/testaccess/guide.htm - Test access and accommodations

http://www.specialedmoms.com/informationbystate.html - The following phone numbers and addresses will enable you to contact the special education officials for your state. Office personnel can answer your state-specific special education questions.

4. Who helps with what? Which state agencies are involved in health care and health coverage? What do medical and managed care terms mean? What should families look for in selecting a provider? What questions should families ask?

http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=137

The President's New Freedom Initiative has developed a user friendly disability website that has links to more than a dozen governmental agencies and many non-profit organizations. People with disabilities, their advocates, and professionals can search by topic and don't need to know which organization to look for. The general topics are employment, health, transportation, housing, civil rights, benefits, technology, and community life.

www.hcbs.org The majority of the information on this site is generated by CMS grantees, including the Community Living Exchange Collaborative, however, we are constantly seeking out useful information from many different sources, including researchers, non-profit organizations and other websites

5. Parent-to-parent support skill-building (How can parents provide support and assistance to families without substituting their judgment? Understanding and respecting cultural diversity. How can parents be culturally competent in working with diverse families? How can parents emotionally support, inform, and educate parents so that they are strong, knowledgeable, and confident in caring for their child with special health needs?)

http://www.wrightslaw.com/flyers/college.504.pdf - site for students with disabilities in College

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=389&expandnodeid=387 - care giving tips/SKILLS

http://www.kidsource.com/NICHCY/choosing.doctor.all.4.html - parents guide to selecting a doctor, disabilities and the family

6. Keeping Records is a learned skill. Parents will learn what kinds of records are important and how to record necessary information. Your child’s health care providers rely on your records to help them make sound medical recommendations.

http://www.gofso.com/Premium/LE/21_le_ot/fg/fg-Doc_Locator.html - advice on how to keep important documents and where to file them!

http://www.librarysupportstaff.com/papermngt.html - site that discusses how long to keep important papers and how to organize them.

7. Parent-professional collaboration strategies. How can families work with their health care provider to secure quality care and coverage for their child? How can health care providers and families communicate more effectively? What are effective health advocacy strategies? What is a “medical home” and how can parents access it for their child with special health needs?

http://www.cyfc.umn.edu/publications/connection/pubs/05summer/index.html - Collaboration of policies and families.

http://www.ncfr.org/pdf/NCFR_Checklist.pdf - checklist on impact of programs and policies on families

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

http://www.mchpolicy.org/50-StateAnalysisofMedicaidBenefitCoverageforChildrenwithoutEPSDT.pdf.pdf. - A 50-State Analysis of Medicaid Benefit Coverage for Children without EPSDT provides an analysis of the Medicaid coverage that would be available to children in each state if the Early and Periodic Screening, Diagnosis and Treatment Program (EPSDT) benefit requirement was eliminated. The memorandum, produced by the Maternal and Child Health Policy Research Center for the March of Dimes and the National Association of Children's Hospitals, is based on state plans and state plan
amendments, current as of April 2005. Twelve benefits of particular importance to children with chronic physical and developmental conditions are examined, including physician services, inpatient hospital services, outpatient hospital services, prescription drugs, physical therapy, occupational therapy, speech therapy, home health services, private duty nursing, personal care services, durable medical equipment, and medical supplies

http://www.lewrockwell.com/taylor/taylor120.html - Double-Dipping: Special Education and Medicaid

9. Legal information - what are the rights of children to medical coverage under Medicaid, SCHIP, fee-for-service coverage. How can families use complaint, arbitration, and grievance procedures to resolve disputes? What are the legal obligations of schools to provide health-related services and therapies?

http://www.hhs.gov/ocr/hipaa/assist.html - Medical Privacy - National Standards to Protect the Privacy of Personal Health Information

http://academic.luzerne.edu/cmahalick/HIPPA/hippatraining_files/frame.htm - HIPPA PowerPoint - explaining what HIPPA is

file:///C:/WINDOWS/Temporary%20Internet%20Files/Content.IE5/11K0OZSD/256,1,Confidentiality/Privacy Issues: The Impact of HIPAA - POWERPOINT

Other links

http://www.abledata.com/abledata_docs/Children_Wheelchair.htm - a great fact sheet on wheelchairs

http://www.waisman.wisc.edu/hrtw/Adult_Teen.pdf - transitioning to adult health care services for the child with special health care needs

http://www.abms.org/ - to verify physician certification

Have you found valuable links that you would like to share?

Please email them to Diana Autin, diana.autin@spannj.org or fax them to 973-642-8080. Many thanks to Parent to Parent of NYS for information on these resources!