Legal and Insurance
Among the many challenges facing families of individuals who have chronic debilitating disease is the need to provide the finances to cover necessary care and equipment. This need may, in fact, extend beyond the lifetime of the financial guardian (parent, spouse, etc.). We strongly encourage you to seek professional assistance to assist you in dealing with these matters. The following is a listing of web resources that may help you learn about questions to ask and about the professionals who are available in your area.
Laws, Legal Support, and Information
- Coalition for Genetic Fairness Online Publication on the Genetic Information Nondiscrimination Act
- http://www.specialneedsalliance.com/
- http://www.iser.com/specialneeds-attorney-articles.html
- http://www.nichcy.org/resources/LAWS2.HTM
- http://www.fape.org/
- http://uniquelygifted.org/schools.htm#_Legalities_of_Gifted/Special
Insurance and Other Financial Support and Information
- http://www.metlife.com/Applications/Corporate/WPS/CDA/PageGenerator/0,1674,P475,00.html
- http://www.acf.hhs.gov/
- http://www.acf.hhs.gov/acf_services.html#ddamr (Health and Human Services Administration for Children and Families)
- http://www.forbes.com/personalfinance/estate_planning/2005/04/11/cx_sr_0411kids.html
- http://www.specialneedsplanning.com/
- http://www.kidsource.com/kidsource/content4/estate.dis.all.3.3.html
- http://www.eparent.com/lifeplanning/financial/financial04_03.htm (Exceptional parent article on taxes, etc.)
- http://www.eparent.com/lifeplanning/default.htm
- http://askmerrill.ml.com/tmp/marketing_centers/aap_sn_subcenter.asp?CPAO=SNEED (Merrill Lynch)
- http://www.medicalhomeinfo.org/
- http://www.minutemanarc.org/familyfunding.html (Massachusetts only)
- http://www.partoparvt.org/Funding.html (Vermont only)
- http://www.kidstogether.org/at_ffdf.htm
- http://www.acf.hhs.gov/
- http://www.rotary.org/
- http://www.ntsad.org (select “Advocacy” from the menu bar and then “Individual/Patient” from the drop down menu)