KSG Dwarfism Advocacy Center
Resources for improving access to health care, careers, legal issues, scholarships, and parenting.
Information about Employment
If you are having trouble finding meaningful, well-paying work because of physical disabilities, please try the following resources. There are many sites here. Please browse until you find the site that suits your career needs:
- Vocational Rehabilitation: http://www.disabilityresources.org/VOC-REHAB.html
Vocational rehabilitation is a federal program. Its goal is to assist in the provision of services to enable individuals with disabilities to pursue meaningful careers and employment commensurate with their abilities and capabilities.
- American Association of People with Disabilities is the largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities: http://www.aapd-dc.org/.
- US Government’s Disability Information New Freedom Online Resources for People with Disabilities: http://www.disabilityinfo.gov
- Driving accommodations.
- Another helpful US Government page: http://www.govbenefits.gov/. This is a free, easy-to-use, and completely confidential page to match people with programs they are eligible for.
- Disability Issue Information Clearinghouse: http://www.accessiblesociety.org/index.shtml
- Contact your local Center for Independent Living (CIL) for employment listings and career counseling or visit the National Council on Independent Living (NCIL): http://www.ncil.org
- Visit the World Institute on Disability: http://www.wid.org
- Visit Marty Nemko’s web site about improving your worklife and education. The quick tips section is very useful for getting started. Also contains dozens of articles on careers: http://www.martynemko.com/
- Make sure you are wearing professional, well-fitting, flattering clothes for your interview. Please visit the clothing section to find an interview suit, shoes, etc.
- Please see the section on the Americans with Disabilities Act for information about workplace accommodations you are legally entitled to.
Health Insurance
- Getting an appointment with a specialist
- How to report problems in your Health Plan
- Get medical expenses covered
- Choosing a Health Plan
- Grants to help pay for medical expenses and assistive technology/adaptive equipment
Getting an appointment with a specialist.
This section under construction. Please contact us with questions or suggestions.
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How to report problems in your Health Plan
As soon as you have a problem, document everything and take action. Take notes, document everything, and always be pleasant with whomever you speak with. Do not expect your health plan to respond quickly to your complaint. There are many organizations and officials that will help you get the care you need and deserve. People with dwarfism should never accept less care because of their condition.
- Contact genetic advocacy groups.
- Contact Dr. Kenneth Lee, Little People of America National Policy Advisor: leeke@ohsu.edu
- Health Advocacy Toolbox. Tips for advocacy, recommended reading, related links: http://www.cthealthpolicy.org/toolbox/Default.htm
- National Association of County and City Health Officials: Health advocacy in government, find your legislators, tips on writing legislators about health advocacy issues http://congress.nw.dc.us/naccho/issues/basics/?style=comm
- Association of State and Territorial Health Officials: http://www.astho.org/index.php?template=public_health_advocacy.html
- Directory of State Public Health officials. Find people who can help you by state, hotlines to call, specific governmental organizations that can help you with certain conditions: http://www.statepublichealth.org/
- Contact the California Center for Public Health Advocacy: http://www.publichealthadvocacy.org/
- Health Education Advocate has advocacy tips, info on finding your congresspeople, lists of advocacy websites, advocacy alters, and more: http://www.healtheducationadvocate.org
- Public Health Advocacy Institute: http://www.phaionline.org
- Mental Health Advocacy: http://www.mentalhealthadvocacy.com
- A journal about health policy: http://www.healthaffairs.org/
- Cover the uninsured week: http://covertheuninsuredweek.org/
- Please email us if you are unable to get help near where you live.
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Get medical expenses covered/Dealing with your HMO
- http://www.pai-ca.org/ Protection & Advocacy, Inc. (PAI) “Advancing the human and legal rights of people with disabilities.” Legal or advocacy questions: 1-800-776-5746 TOLL FREE Administration: 916-488-9955. This site has a wealth of resources for fighting discrimination against the disabled and getting access to needed services. (last checked August 2004)
- Cover the uninsured week: http://covertheuninsuredweek.org/
- http://www.peoplesmed.org/ “The People’s Medical Society is a nonprofit organization dedicated to educating YOU, the consumer, about health care and your medical rights.”
- Extensive list of health advocacy resources compiled by the Ehrlos Danlos Group
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Choosing a Health Plan
- Centers for Medicaid and Medicare: http://www.cms.hhs.gov/schip (last checked April 2004)
- Official Medicare site: http://www.medicare.gov (last checked April 2004)
- Find health insurance quotes, compare plans: http://www.medicaid.gov
- Information about Maine’s New Rules on Universal Health Care: http://www.newrules.org/equity/mehealthcare.html
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Grants to help pay for medical expenses and assistive technology
- Little People of America’s http://www.lpaonline.org‘s, Health Advocacy Fund: http://www.lpaonline.org. Advocacy Fund provide monies for a one-time use to assist LPA members in contributing toward their financial obligations for various dwarf-related medical expenses. There is no application deadline.
- Christopher Reeve Foundation Quality of Life Grants for non-profits http://www.christopherreeve.org/QLGrants/QLGrantsList.cfm?c=11. Deadlines for applications are April 1 and October 1 of each year. Funding decisions are announced in June following the April deadline and in December following the October deadline. (last checked June 2004)
- The Mitsubishi Electric America Foundation gives national “Starfish Grants” to benefit young people with disabilities throughout the country: http://www.meaf.org/grants/ (last checked April 2004)
- Financial Aid for Eye Care: http://www.nei.nih.gov/health/financialaid.htm (last checked April 2004)
- Association of Blind Citizens will provide funds to cover 50% of the retail price of adaptive devices or software http://www.blindcitizens.org/assistive.html. (last checked February 2005)
- Information about single payer health insurance: http://www.got.net/~seaseal/healthcare
- Informed consumer’s guide to funding assistive technology: http://www.abledata.com/Site_2/funding.htm (last checked February 2005)
- Kurzwell Educational Systems Teacher Resources – Funding Information Sources for Assistive Technology: http://kurzweiledu.com/proof_resources_funding.asp (last checked April 2004)
- Using Mini-Grants to Fund Assistive Technology for Students with Severe Disabilities: http://www.ttac.odu.edu/Articles/minigrant.html (last checked April 2004)
- Ronald McDonald House ‘Home Away From Home’ — a place to stay while your child is in the hospital:http://www.rmhc.org/index.html
Ronald McDonald House also provide low-cost mobile medical care http://www.rmhc.org/mission/care_mobile/index.html - Patient assistance for paying costs of pharmaceuticals (site by drug manufacturers): https://www.pparx.org/Intro.php
- State Pharmaceutical Assistance Programs (includes seniors, disabled, uninsured and others): http://www.ncsl.org/programs/health/drugaid.htm (last checked April 2004)
- Search the helpful benefits connection site, a US Government page: http://www.govbenefits.gov/. This is a free, easy-to-use, and completely confidential page to match people with programs they are eligible for.
- Government programs: http://www.disabilityinfo.gov/digov-public/public/DisplayPage.do?parentFolderId=5163 (last checked February 2005)
- Search Mobility International USA for grants http://www.miusa.org (last checked April 2004)
- Funding for organizations for community education, programs to identify community needs and mobilize resources to meet them, fostering social and economic justice:http://fdncenter.org/grantmaker/harrychapin/
- Cover the uninsured week: http://covertheuninsuredweek.org/
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Getting money and flights to travel to doctor visits
- http://www.PatientTravel.org or call 1-800-296-1217. This phone line is staffed 24 hours/day, 365 days a year. A list of medical travel sites in the USA, also lists travel resources by state. (last checked May 2004)
- If you will be traveling to a hotel, see if they already have a dwarfism accessibility kit: http://www.lp-access.com
- A comprehensive list of free medical flights: http://www.acor.org/ped-onc/resources/airlineflights.html
- http://www.aircareall.org/: “The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. This site will introduce you to us and to all the groups we list whose volunteers perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service. “
- http://www.angelflightamerica.org: “Angel Flight provides, through its members, access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis.”
- http://www.corpangelnetwork.org: free use of empty spaces on corporate jets for children going for cancer treatments.
- http://www.mercymedical.org: helping those in need of medical transit.
- Miracle Flights for Kids, http://www.uwint.org/ Free flights for medical emergencies.
- http://www.bobiverson.com/dreamline: flights for medical or vacation trips for families of seriously ill children.
- http://www.lifelinepilots.org: Uses small private air crafts for free flights for medical emergencies and other compelling needs.
- http://www.miracleflights.com: Flights for children with medical needs.
- Search the Mobility International USA http://www.miusa.org/ (last checked April 2004)
Travel Funds for Conferences
- Lee Kitchens Travel Fund for people going to conferences for the first time (deadline is April 30, 2004): http://www.lpaonline.org
- Some state Developmental Disability Councils offer scholarships to self-advocates for conferences related to their disabilities: http://www.acf.dhhs.gov/programs/add/states/ddcs.htm
- Federal Government Site for funds for children with disabilities: http://www.childrenwithdisabilities.ncjrs.org/grants.html (last checked April 2004)
- If you will be traveling to a hotel, see if they already have a dwarfism accessibility kit: http://www.lp-access.com
The Americans with Disabilities Act
- Ability Magazine’s ADA section: http://www.abilitymagazine.com/jobaccess/ada_law.htm. This is a good place to start. There is also a Frequently Asked Questions section: http://www.abilitymagazine.com/jobaccess/ada_faq.htm.
- United States Department of Justice ADA page: http://www.usdoj.gov/crt/ada/adahom1.htm
- United States Equal Employment Opportunity Commission ADA page: http://www.eeoc.gov/facts/fs-ada.html
- If you will be traveling to a hotel, see if they already have a dwarfism accessibility kit: http://www.lp-access.com/index_files/frame.htm
Information about HIPAA
HIPAA stands for Health Insurance Portability and Accountability Act. It sets standards for the privacy of medical records and the ability to carry your health insurance from one insurer to the next.
- Answers to frequently asked questions about HIPAA from the US health and human services.
- The Health Privacy Project: http://www.healthprivacy.org. Find out the most recent privacy information, how to file a claim, and about state and privacy laws federal laws.
- Information about HIPAA for researchers: http://privacyruleandresearch.nih.gov. This site has many links about consent forms.
- Center For Disease Prevention and Control information on HIPAA http://www.cdc.gov/nip/policies/hipaa/hipaa_faqs.htm.
- http://www.pai-ca.org/ Protection & Advocacy, Inc. (PAI) “Advancing the human and legal rights of people with disabilities.” Legal or advocacy questions: 1-800-776-5746 TOLL FREE Administration: 916-488-9955. This site has a wealth of resources for fighting discrimination against the disabled and getting access to needed services. (last checked August 2004)
- Information about how HIPAA protects health insurance coverage: http://www.cms.hhs.gov/hipaa/hipaa1.
- HIPAA link for Medicare and Medicaid services: http://www.cms.hhs.gov/hipaa/hipaa2.html/.
- Some helpful conference proceedings: http://www.hhs.gov/ocr/hipaa/conference/research.pdf.
- View videos about HIPAA including HIPAA basics and how to file a claim: http://www.eventstreams.com/cms/tm_001/.
- More info: (866) 282-0659 HIPAA Hotline. Send email to: askHIPAA@cms.hhs.gov.
Other disability Resources
- Pushing Limits KPFA, Independent Public Radio, show about empowering people with disabilities: http://www.kpfa.org/archives/archives.php?id=12&limit=N. Great shows on many topics: People of color and disabilities, senior citizen issues, legislative issues, Medical, Public transportation, and more. If you are ever feeling down, listen to a broadcast for ideas and inspiration.
- Visit the KSG newsletters section for newsletters about medical and advocacy issues.
- Are there advocacy links we don’t have but should? contact us. We would love to hear from you.
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