Archive of Previous Links

[Advocacy and Leadership]  [Financing Issues]  [504 Accommodation Plans]  [Keeping Records]
[Parent to Parent Support Skill Building]  [Collaboration Strategies]  [Medicaid Waiver Services]
[Legal Information]  [Emotional/Coping Issues]  [Who Helps With What?]  [Other Links]

1.  Advocacy and Leadership

http://www.wrightslaw.com/advoc/articles/advocacy_intro.htm - advocating for your child

http://www.autisme-montreal.com/english/ADVOCACY.html - explains myths of advocating

http://www.unitedwaypassaic.org/pdf/May_Ask_the_expert.pdf - short to the point article on advocating.

http://www.pacer.org/pride/complnt.htm - filing an ADA complaint 

http://www.childrensdisabilities.info/advocacy/index.html - Special Needs Advocacy Articles                                                                      

http://www.comeunity.com/disability/advocacy.html - collection of articles on advocating for your child

http://www.geneticalliance.org/ - advocacy

http://www.elc-pa.org/brochures/htbgoodadvocate01.htm - great site for parents on how to advocate for their child

http://www.voicesforamericaschildren.org/Template.cfm?Section=Advocacy_Strategies - articles on advocating for your child to change policy 

http://www.plainlanguage.gov/ - Health Care information in plain languages.

http://www.childadvocate.net/medical.htm - advocating for CSHCN

http://www.thegraycenter.org/advocating.htm - tips and ways to effectively advocate for your child.  

http://www.northcountrypublicradio.org/news.php?getnewsfordate=
1&mm=04&dd=25&yyyy=2005#5576 - This is a link to the start of a year long series about individuals living with disabilities, Disability Matters.

http://www.keepkidshealthy.com/ - a website that covers a wide array of topics, tips, symptoms, etc. for parents and is parent friendly.

http://www.oregonparentsunited.org/howto7.htm - questions to ask the professionals who will be working with your children.

http://www.fifionline.org/images/PDF%20Files/wl.pdf - a site designed to assist parents in writing an effective letter.

http://www.lymphomation.org/doctor-visits-checklist.htm - checklist on Drs. Visit;

http://www.parenting-ed.org/handout3/Parental%20Involvement/Communication%20w%20%20School%20Staff%20handouts.pdf - communicating effectively with your child's school  

 http://www.listen-up.org/rights/rights.htm#legal - over 25 sample letters for parents to use.

 http://www.fapesolutions.com/Letters/SelectLetter.asp - website of letter templates.

 http://www.bipolar.com/living/talk.htm - excellent advice on speaking with your doctor (applies to any DOCTOR)

http://www.fifionline.org/images/PDF%20Files/wl.pdf - a site designed to assist parents in writing an effective letter.  

http://www.aboutourkids.org/aboutour/articles/backtoschool.html - compilation of articles on back to school when you have a child with special needs.

http://www.aciniccell.org/patient_to_do_list.html - a site in which valuable information about the patient’s role in their medical care is provided.

http://www.nclid.unco.edu/Hvoriginals/Advocacy/Popup/popup.html - IEP pop-up site where you click on favorite saying of your school CSE Chair and the “real” answer lies behind it.

http://www.slc.edu/data/433/link/418/bulletin_s99.pdf = Health Care Advocacy Bulletin – many great articles.

2. Financing issues – health insurance and other ways to finance the costs of needed services

http://www.healthcarerights.org/letters/lettersindex.html - this site contains sample letters to write to insurance carriers (i.e. denials, etc.)

http://members.aol.com/jasonwolff/hmohelp.htm#rules – informal guide to appealing health insurance claims and how to deal with insurance carriers

http://www.eparent.com/healthcare/not_covered.htm - Article on getting the most our of your insurance carrier

http://info.insure.com/health/faq/index.html - insurance Q&A’s

http://www.patientadvocate.org/ - The Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

http://www.massfamilyvoices.org/resources/dph.html - tips on navigating the systems and many other applicable links to help parents navigate the system.

http://www.patientadvocacy.net/ - Helps resolve insurance reimbursement problems.

http://www.ins.state.ny.us/website1/inshelp/carehelp.htm - for the seriously ill and their caregivers.  Provides important information on health insurance rights and how to exercise there rights to ensure proper access to health insurance coverage.

http://www.healthcarecoach.com/featuredcontent.php - tips on insurance information

http://www.aacap.org/publications/factsfam/insuranc.htm - understanding your insurance for your mental health needs

http://www.hydroassoc.org/newsletter/Healt-INS_Fall_2003.htm -getting the most out of your insurance carrier

http://www.schwablearning.org/articles.asp?r=773 - For those of you paying out of pocket for transportation, special schools, OT, PT, etc., please read this carefully and learn all you can so you know what you are entitled to.

http://www.ahrq.gov/consumer/hlthpln1.htm - choosing and using a health care plan

http://www.aap.org/family/mancarbr.htm - Q&A’s on insurance plans

http://www.apraxia-kids.org/indexes/tips.html - great site on how to access services

http://www.freeadvice.com/insurance_law/health_insurance/ - Offers information in a question and answer format.  Easy to read.

http://www.bottomlinesecrets.com/blpnet/category.html?category_id=0 - ways to obtain healthcare for less             

http://www.cmwf.org/topics/topics.htm?attrib_id=9105&portal=yes  A site which has numerous articles about health care and many topics (i.e. HC and minorities, etc.)  

http://www.mchpolicy.org/publications/schip.html - Information and advice on affordable health insurance for children provided through policy information and the center’s own research. Site discusses many issues of importance regarding health insurance for children, such as rising health insurance costs, and also includes health insurance statistics.

http://www.studnickyfinancial.com/healthinsurance.htm - understanding health insurance

http://www.wid.org/publications/?page=equity&sub=200505&topic=profile  Asset Building Pitfalls: Navigating the Maze with a Disability

http://www.in.gov/idoi/consumer_services/healthin.html#checklist - understanding and making sense of your insurance, frequently asked questions.

http://www.ins.state.ny.us/website1/inshelp/c_denial.htm - claim or your request for a specific treatment is denied, you have appeal rights mandated in the law.  This site will assist you.

http://erisaclaim.com/medical_denials.htm - if you scroll down on this site you will find a copy of:“Health Plans Agree to Provide Required Coverage Information”

http://www.studnickyfinancial.com/healthinsurance.htm - understanding health insurance  

http://www.healthcarerights.org/letters/lettersindex.html - sample letters designed to assist you in getting treatment, medical care, billing problems, and other issues related to your health insurance.

http://www.healthinsurance.org/insterms.html - this site answers your questions regarding health insurance.

3.  504 Accommodation Plans related to Health Conditions

http://www.k12.wa.us/healthservices/pubdocs/appendB.pdf%20-%20Individual%20Health%20Plan/504 Plan

http://www.nasn.org/positions/careplans.htm - National Association of School Nurses Position statement on IHPs.

http://www.spannj.org/Family2Family/individual_health_plan.htm - defines exactly what an Individual Health Plan is

http://www.adda-sr.org/504.htm - chart on what exactly Section 504 is, does and covers

http://www.pluk.org/Pubs/MT/MT_health_care_forms_240K.pdf - Individual Health Care Plan

http://www.504idea.org/504overview.html - Concise and to the point!  

http://www.slc.sevier.org/504ana.htm - lists of disabilities and modifications used

http://www.nasn.org/briefs/2001brief504.htm - Role of 504 and that of the School Nurse

http://www.theteachersguide.com/504.html - Section 504 and sample 504 plans

http://www.504idea.org/504overview.html - Section 504 - the history and legal ramifications of it

http://www.asdk12.org/depts/SEPRC/laws/understand.asp#504 - website that discusses Section 504 and provides links to four other sites  

http://www.advocacyinc.org/ED8_print.htm - Question and Answers on 504 Plan

http://www.spannj.org/BasicRights/federal_laws.htm#section504 - Section 504 v. IDEA shows the similarities and differences  

http://www.spart7.k12.sc.us/7net/specialeducation/504/504rights.doc - parents/children’s rights under Section 504

http://www.mpf.org/SPIN/FAQ%20Sheets/504IDEA.html  - explains Section 504 in simple terms.

http://www.theteachersguide.com/504.html - Section 504 Manual 

 http://jeffcoweb.jeffco.k12.co.us/isu/504/ - information on 504 plans and implementing same.

 http://jeffcoweb.jeffco.k12.co.us/isu/504/5043.html#Cystic - examples of accommodations/modifications given for specific diagnosis' under Section 504

 http://www.davis.k12.ut.us/classact/guide.htm#Practical - excellent site with specific accommodations for Section 504 plans and medications for students

http://www.spart7.k12.sc.us/7net/specialeducation/504/504rights.doc - parents/children’s rights under Section 504  

http://www.cqc.state.ny.us/Advocacy/paccess.htm - using Section 504 to gain accessibility in the Courts

http://www.ed.gov/about/offices/list/ocr/docs/hq5269.html - Description of Section 504 from US Department of Education.

4.  Parent-to-parent support skill-building 

http://www.focus-ga.org/newsletter_2003.htm a site where parents share stories, etc.

http://www.healthliteracy.com/tip-feb2005.html -  ways to communicate effectively

http://findajob.aol.com/findajob/articles/article.adp?id=694 – communication tips/skills  

http://www.schwablearning.org/articles.asp?r=862&g=2 - skills on reviewing evaluations

http://www.theteachersguide.com/ParentsMovingGuide.html - NICHY’s guide to schools

http://endoflifecare.tripod.com/Caregiving/id26.html - caring for children who are seriously ill at home

http://olrs.ohio.gov/asp/pub_NegotiationSkills.asp - parents learn to deal with school officials.

http://www.mdausa.org/publications/101hints/index.html - tips on patient care for parents

http://www.noah-health.org/en/procedures/about/glossaries.html - glossaries of medical terms and tests  

http://www.tourettesyndrome.net/Files/organizing_concerns.pdf - Form to complete for parents prior to CSE so that your thoughts are organized.

http://www.ahcpr.gov/consumer/20tipkid.htm - Fact sheet on avoiding medication errors in children

http://www.quackwatch.org/ - de-myths the myths heard in healthcare

http://www.planetfeedback.com/companyWrapper/0,2962,100-35-D,00.html - A Site where you supply the complaint/compliment and they write the letter and send it to the appropriate company (i.e. insurance company, etc.)

http://www.kidsource.com/NICHCY/letter.dis.k12.4.2.html - teaching parents to communicate via letter writing  

http://spiral.tufts.edu/ - selected patient information resources in Asian Languages 

http://www.terrificparenting.com/ - parenting newsletter which may assist in developing skills

http://www.uic.edu/orgs/empower/center_for_capacity.htm - Center for Capacity Building on Minorities with Disabilities Research

http://www.healthinschools.org/parents/handout5.pdf - finding out how your school handles Medical Emergencies at School

http://www.familyeducation.com/article/1,1120,23-16631,00.html - Collaborating - home and school

http://ohioline.osu.edu/ss-fact/0131.html - fact sheet on helping your Doctor to help you

http://www.thearc.org/faqs/grief.html - Managing Grief Better:  People with Developmental Disabilities

 http://www.cmwf.org/publications/publications_show.htm?doc_id=233925 - Urban Parents' Knowledge and Practices Regarding Managed Care

 http://www.cmwf.org/publications/publications_show.htm?doc_id=237885 - Policies to Reduce Racial and Ethnic Disparities in Child Health and Health Care

http://www.healthinschools.org/radio.asp - collaborating with radio & media  

http://www.acronymfinder.com/ - website designed to assist you in acronyms!

http://www.abms.org/Downloads/Which%20Med%20Spec.pdf - explanation of what specialists covers what.

http://www.specialconnections.ku.edu/cgi-bin/cgiwrap/specconn/
main.php?cat=auxil&section=sitemap - site that goes into details about various goals found on your child's IEP

5.  Keeping Records is a learned skill. Your child’s health care providers rely on your records to help them make sound medical recommendations.

http://okvoices.org/recordkeeping.html - keeping records

http://www.coping.org/growth/time.htm - managing time

http://www.bluesuitmom.com/family/home/medicalprofile.html - quick medical profile form for babysitter  

http://www.fetaweb.com/03/organize.file.htm - how to keep files

http://www.wrightslaw.com/info/advo.paperchase.crabtree.htm - what papers to keep

http://www.ldonline.org/ld_indepth/general_info/record_keeping.html - what to keep and how to keep it

http://www.okvoices.org/recordkeeping.html - article on keeping your child’s records

http://www.spannj.org/BasicRights/what_is_iep.htm
#childsfile - what do keep in your child’s home file  

http://hhs.gov/familyhistory/download.html - keep your family's health history organized w/ this download.

http://www.causeonline.org/iepfiletxt2.html - how to keep files on your child’s school records (i.e.IEP)

http://www.elc-pa.org/how%20to%20be%20good%20advocate.pdf - how to be a good advocate for your child and keep good records.

http://www.umaine.edu/cci/service/maineworks/mhcn.doc - The pages in the Maine Health Care Notebook can help you in organizing your information.

 http://www.pacer.org/mpc/pdf/mpc-44.pdf - communicating with and keeping track of your child’s school through record keeping.

 http://www.uchicagokidshospital.org/pdf/UCH1000145.pdf - blank emergency phone list for parents to complete for emergencies.

http://www.wrightslaw.com/info/advo.paperchase.crabtree.htm - how to keep track of your child’s IEP and other pertinent information.

http://www.additudemag.com/additude.asp?DEPT_NO=302&SUB_NO=34 - getting organized for the first day of school.

http://www.additudemag.com/additude.asp?DEPT_NO=302&SUB_NO=9 - record keeping tips

6.  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? 

http://medhome.med.utah.edu/families/fam.cfm?fam_id=30&class= - talking to health care professionals

http://www.growthhouse.org/search.htm  - talking to your Dr., choosing a Dr, etc.

http://home.nea.org/books/idea/ch6.html - National Education Association site and advises schools and parents on education issues.

http://www.anapsid.org/cnd/diagnosis/canwetalk.html - communicating with your Dr. (great article)

http://www.americanheart.org/presenter.jhtml?identifier=1655 – quick tips on working with your Dr.

http://www.tttsfoundation.org/-Communicating%20with%20Your%20Physician.html – Article written about parents dealing with Doctors during critical times.

http://gucchd.georgetown.edu/nccc/transition.html - who does what as you transition to adult health care services  

http://endoflifecare.tripod.com/Caregiving/id12.html - sample letters for your Dr. To use or guide you     

http://www.starbright.org/projects/vwa/bts_moreinfo.html - working with the school when your child returns after absences

http://www.ahcpr.gov/consumer/quicktips/doctalk.htm - Fact Sheet on Talking to your Doctor

http://www.mdlinx.com/pediatriclinx/index.cfm - top most recent pediatric articles; by becoming educated parents can help there child and doctor more.

http://www.healthliteracy.com/tip-mar2005.html - communication with health providers - tips!

http://www.ahrq.gov/consumer/surgery.htm - 10 questions to ask before surgery  

http://www.healthinschools.org/parents/handout4.pdf - medication management in school – working with the school nurse;

http://www.ahuinc.com/faqs.html - by asking good questions to your insurance carrier selection you will make a better choice in selecting your provider.

http://www.healthinsurancechecklist.com/faq.html - questions to ask before selecting an insurance carrier

http://oci.wi.gov/sm_emp/wrksheet.pdf - checklist to use when comparing insurance carriers

http://www.elc-pa.org/how%20to%20be%20good%20advocate.pdf - how to be a good advocate for your child and keep good records.

http://health.yahoo.com/health/centers/insurance/27.html - who to get the most from your insurance

 http://billinghelp.inlandhospital.org/resources/insurancedenials.htm - how to appeal denials by the insurance company

 http://www.healthsymphony.com/appealing.htm - tips and ways to write an appeals letter.

 http://www.medicalhomeinfo.org/resources/general.html#present = The National Center has compiled and organized all of the articles, policy statements and reports that have been developed on the Medical Home and the 7 elements that ensure that care is accessible, family-centered, continuous, comprehensive, coordinated , compassionate and culturally competent.

http://hctransitions.ichp.edu/ - transitioning to adult services  

http://www.skaggs.net/chooseaphysician/communication_tips.htm - tips on communicating with your Dr.

http://www.painrelief411.com/blank?pageid=5 - tips on communicating with your Dr.

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

http://medhome.med.utah.edu/families/fam.cfm?fam_id=19&class= various financial information (SSI, Medicaid, etc.)

http://www.bianys.org/We_help/nursing_community.html - for Invididuals w/ TBI

http://www.medicare.gov/Prescription/Home.asp - Medicare Prescription Drug Assistance Program. Provides information on programs that offer discounts or free medications to individuals in need.

http://www.ssa.gov/ - This is a social security program (USA) for disabled people, including children with cancer. Depending on your family income, you may be eligible for SSI. Phone your local agency by looking for the number of the social security administration under the US government listings. Direct links to pertinent information on pages within this site

http://www.childrenshospitals.net/Template.cfm?Section=Fact_Sheets&CONTENTID=11627&TEMPLATE=/ContentManagement/ContentDisplay.cfm - Medicaid 101

http://cms.hhs.gov/medicaid/ - Medicaid is a jointly-funded, Federal-State health insurance program for certain low-income and needy people. It covers approximately 36 million individuals including children, the aged, blind, and/or disabled, and people who are eligible to receive federally assisted income maintenance payments (like SSI). Rules on eligibility for Medicaid vary from state to state, but you might be eligible if your hospital bills are only partially covered. Medicaid sometimes pays transportation and prescription costs. Phone your local or county service department to find the number for the Medicaid office in your area.  

http://www.child-disability.com/ - understanding SSI and application process

http://www.health.state.ny.us/nysdoh/child/special_needs/resource_directory.htm Resource Directory for Children with Special Health Care Needs http://www.health.state.ny.us/health_care/medicaid/ - understanding Medicaid

http://www.health.state.ny.us/health_care/medicaid/program/longterm/omh.htm For Children and Adolescents with Serious Emotional Disturbance - Office of Mental Health (OMH)  

http://www.familiesusa.org/site/PageServer?pagename=homepage - has up-to-date articles and information on Medicaid                 

http://www.childrenshospitals.net/NACHTemplate.cfm?Section=SPS_Update&Template=/TaggedPage/TaggedPageDisplay.cfm&TPLID=84&ContentID=10296 -up-to-date information on Medicaid.

http://www.kff.org/medicare/med020705pkg.cfm - parents guide to navigating Medicare/Medicaid.  

http://www.hcbs.org/recentPosting.php - Tired of reaching dead ends as you search on-line for information about home and community-based services?

www.hcbs.org is a Web site designed with YOU in mind.  They understand that you’re curious about what other states are doing with their Real Choice Systems Change grants. The Clearinghouse for the Community Living Exchange Collaborative, www.hcbs.org, has the information you’re looking for, and we’ve made it easy to find.  The Clearinghouse features multiple search options, a home page that changes bi-weekly

http://www.medicaidmatters2005.org/ a toolkit to protect this program

http://www.partoparvt.org/SixWays.html - 6 ways to access Medicaid

http://www.nyc.gov/html/hia/home.htmlFind out more about health insurance options for small business, individuals and sole proprietors so you can make the right choices for yourself and your employees. Find out if you or your family qualify for Medicaid, Family Health Plus or Child Health Plus using HealthStat's on-line pre-screening system.

http://thedesk.info/ - information about Medicaid for people with cognitive disabilities.

http://www.cms.hhs.gov/medicarereform/factsheets.asp. - many quick facts, tip and fact sheets, and outreach materials about the new Medicare Prescription Drug Coverage are available

http://www.cms.hhs.gov/partnerships/tools/materials/medicaretraining/MPDCoutreachkit.aspCMS has designed a "tool kit" that partners like you can use to help your clients select a Medicare drug plan that meets their needs.  You can view and/or download the tool kit at

http://www.ssa.gov/notices/supplemental-security-income/spotlights/spot-deeming.htm - deeming parental income and resources

http://www.parentednet.org/ssandssi.html - detailed site about SSI and eligibility

http://parentsreachingout.ownspot.com/upload_user/SSI Booklet - 11.12.03.pdf - a booklet on SSI  

http://www.cgr.org/ICSG/Articles/?id=155 - changes in Medicaid

http://www.ocfs.state.ny.us/main/publications/eligibility/29%20A%20Guide%20to%20SSI.pdf - a guide for parents to SSI and SSI benefits for children in out-of-home care

8.   Legal information - what are the rights of children to medical coverage under Medicaid and fee-for-service coverage. How can families use complaint, arbitration, and grievance procedures to resolve disputes? 

http://www.pluk.org/Pubs/Fed/Disabilitylaws_508k.pdf - Guide to Federal Disability Laws

http://user.cybrzn.com/~kenyonck/add/iep_guidance.html - Practical and Legal Guidance for Parents.

http://ericec.org/digests/e576.html - amendments to education laws

http://www.wrightslaw.com/advoc/articles/iep.guidance.pf.html - - Practical and Legal Guidance for Parents.

http://www.moonbowmedia.com/health/HIPAA.htm - HIPPA information  

http://www.spedlawyers.com/questions_often_asked_by_parents.htm - questions and answers

http://www.health.state.ny.us/nysdoh/opmc/main.htm - filing complaints about professionals (medical professionals)  

http://www.copaa.org/index.html - The Council of Parent Attorneys and Advocates, Inc. (COPAA) is an independent, nonprofit, §501©)(3) tax-exempt organization of attorneys, advocates and parents. Our primary mission is to secure high quality educational services for children with disabilities.

http://www.law.cornell.edu/topics/education.html - site on education law

http://www.reedmartin.com/ - site on education law and advocacy

http://www.spannj.org/BasicRights/federal_laws.htm - federal laws that will assist you  

http://www.usdoj.gov/crt/ada/adahom1.htm - U.S. Department of Justice – American’s with disabilities site.

http://www.usdoj.gov/crt/ada/disabilitynews.htm - disability news - on-line publication

http://www.fifionline.org/presentations.htm - provides a wonderful presentation on HIPPA and informed consent.

http://www.abanet.org/disability/ American Bar Association - mental and physical disability law

http://www.familyeducation.com/topic/front/0,1156,23-3299,00.html - special ed and the law

http://olrs.ohio.gov/asp/olrs_ListOfRights.asp - know your legal rights  

http://www.guideline.gov/summary/summary.aspx?view_id=1&doc_id=4249#s23 - guidelines under the AAP (American Academy of Pediatrics) on administering medication in school

10.    Emotional/Coping issues

http://www.fanconi-anaemia.co.uk/receiving.htm - reactions of family members

http://www.cdlsusa.org/publications/reachingout/archive/taking-care-of-me.html - article on taking care of yourself

http://www.ldonline.org/ld_indepth/teaching_techniques/helping_parents.html  - helping parents to understand what they feel

http://www.chp.edu/greystone/mentalhealth/pcci.php - psychological issues of a chronic illness

http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html  - coping with a chronic illness

http://www.fanconi-anaemia.co.uk/receiving.htm - articles about how families cope 

http://www.cincinnatichildrens.org/about/patient/coping/ - tips on coping w/ chronic illness

http://endoflifecare.tripod.com/Caregiving/id116.html - siblings coping

http://www.kidsource.com/NICHCY/parenting.disab.all.4.2.html - ways for parents to cope - written by a parent

http://www.mayoclinic.com/findinformation/conditioncenters/
subcenters.cfm?objectid=39585526-6882-4FFD-A8110BD96802BFA6 - caring for a sick child      

http://www.center4research.org/wwf1.html - The National Research Center for Women & Families takes a close look at what the research does and does not show, balancing research information with the realities of people’s lives

http://www.listen-up.org/rights/rights.htm#legal - articles on different legal rites of parents.

 http://www.patientadvocate.org/resources.php?p=36 - how to write an appeal letter to your insurance company and sample letters

http://www.childadvocate.net/understanding_disease.htm - what children understand about their disease

11.  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.ichp.edu/managed/materials/902961198.html - organizing and financing of children with special health care needs       

http://www.health.state.ny.us/health_care/medicaid/program/index.htm  -an index of various agencies

http://www.health.state.ny.us/nysdoh/prevent/main.htm - disability and health in New York  - information, programs, etc.

http://www.ppmd.org/familyvoices/fvfactsheets/fedlaws_hfacts.html  - federal programs and sites that assist families of children with special health care needs

http://www.ddpc.state.ny.us/pages/dd_directory.asp - directory of different regions in NY that provides introduction to the community

http://www.aap.org/family/pedspecfactsheets.htm - explains exactly what each specialist does.

http://www.healthinsuranceinfo.net/ - Consumer Guides for Getting and Keeping Health Insurance

http://www.mchlibrary.info/KnowledgePaths/kp_community.html - Locating Community-Based Services to Support Children and Families

http://www.academyhealth.org/publications/glossary.pdf - 51 page glossary of health care terms

 http://cshcnleaders.ichp.edu/TitleVDirectory/directory.htm - listing by state of Title V

http://ec.hku.hk/mt/ - site dedicated to learning medical terms.

 http://www.cigna.com/health/consumer/medical/glossary.html - glossary of health care terms  

http://www.thehealthpages.com/articles/ar-pedia.html - the ABC's of picking a pediatrician.

http://www.ama-assn.org/physinfo/faq_d.htm#general - American Medical Association Site wherein patients can select Drs.

http://www.anapsid.org/cnd/diagnosis/canwetalk.html - how to communicate with your Dr.

12.    Other links that will be of use to families in NJ 

http://medhome.med.utah.edu/families/fam.cfm?fam_id=33&class=  - How families can handle emergencies

http://www.fctd.info/resources/tech101.php -Family Center - information on assistive technology.    Assistive technology is any kind of technology that can be used to enhance the functional independence of a person with a disability.   This site is very informative and contains laws.

http://www.aahomecare.org/ - American Association for Homecare - Find out about different types of homecare available, who offers it and how to choose what's right for you. 

http://www.aahomecare.org/  - National Center on Caregiving/Family Caregiver Alliance - Information, education, services, research and advocacy topics for caregivers or loved ones with chronic, disabling health conditions.   

http://www.nahc.org/ - National Association for Home Care - Current news about homecare-related legislation; also includes a homecare agency locator.
202-547-7424
 
http://www.pacer.org/ - PACER Center, Inc., Health Information and Advocacy Center - This is a parent advocacy site covering a wide variety of topics including education, community support, training for parents and teen transition to employment for special needs kids. 

http://www.care-givers.com/ or http://www.caregiver.com/ - Electronic Newsletters

http://www.thirdaid.com/ - comprehensive of over 800 diagnosis and medications, etc.

For families interested in medication management in schools, check out http://www.healthinschools.org/sh/introduction.asp  

http://www.medicinenet.com/script/main/hp.asp - medical information site written by doctors for families

http://www.eurekalert.org/bysubject/medicine.php - the most recent medical releases  

http://www.informedhealthonline.org/item.aspx This international group dedicated to the study of evidence-based medicine, explains how to decipher clinical studies and how to use them when making decisions about medical care.

http://www.amchp.org/ -  The Association of Maternal Child Health Program examines, tracks and disseminates information on national and state issues, needs, policies, plans and programs on service system development, organization and financing. The association identifies issues relevant to managed care, Medicaid, the State Children's Health Insurance Program and other health service delivery networks and also monitors the impact of welfare reform (Temporary Assistance to Needy Families) on Medicaid, SCHIP and MCH programs.

http://www22.verizon.com/foryourhome/SAS/res_family_servfordis.asp - solutions for people with disabilities  

  http://www.pascocountyfl.net/oem/people.asp - advice for families of people with special medical needs during a crisis (i.e. hurricane)

 http://wehelpmeds.com/home/howitworks.php - assistance with medication costs

http://medical.nettop20.com/ - The Medical Net Top 20 brings you the pick of the most popular and highest-rating sites for medical information on the Net today.  

http://www.parenting-ed.org/handout3/Specific%20Concerns%20and%20Problems/coping%20with%20chronic%20illness.htm - how parents can help their children with chronic illness cope  

http://store.mentalhealth.org/publications/ordering.aspx - National Mental Health Information Center – this site has listings of mental health programs, articles and how to order publications on-line - All Items are Free of Charge

 http://www.healthinschools.org/ejournal/2005/aug2.htm - article on electronic prescribing in the future. 

http://www.aboutourkids.org/aboutour/articles/backtoschool.html - This site has a section for helping all types of children adjust to school.

Have you found valuable links that you would like to share?  Please email them to Diana Autin, Director, SPAN’s Family to Family Health Information and Resource Center, at diana.autin@spannj.org  

 BACK