Useful Websites
Useful Websites
Web Resources
Accessible Outdoors
The Division of State Parks and Recreation's Universal Access Program
Boundless Playgrounds®
Lekotek Online
The country's central source on toys and play for children with special needs
Texthelp Systems Inc
is the worldwide leader of literacy software solutions
Wheelchairs for children
Assistive technology solutions
Assistive/Adaptive technology
Camps and Programs for Kids
Dream Street Foundation
Dream Street provides camping programs for children with chronic and life-threatening illnesses
Hole in the Wall Gang Camp
The Hole in the Wall Gang Camp provides year-round activities for young cancer patients and other seriously ill children (and for their siblings), both at camp and in their own communities
The Silver Lining Foundation
The Silver Lining Foundation brings children who have cancer and other life-threatening illnesses to a safe haven in Aspen, Colorado- 1 week camp
www.mda.org/clinics/camp Muscular Dystrophy Association Summer Camp Program, a large network of camps nationwide; many camps are equipped to care for children with complex medical needs, including mechanical ventilation.
www.easterseals.com/site/PageServer?pagename=ntl_camping_and_recreation Easter Seals Camps general information fact sheet and camp directory
www.campsunshine.org A camp in Maine that offers year-round programming for children with disabilities or chronic illnesses and their families. Camp Sunshine also offers "satellite" programs in Wisconsin and Arizona.
www.dmoz.org/Recreation/Camps/Special_Needs A list of camps in Canada and the US, brief descriptions of the programs offered and the types of disabilities and health care needs that the camp is able to accommodate. Some camps offer family camp programs as well as bereavement support.
www.ncpad.org/fun/fact_sheet.php?sheet=88 The National Center on Physical Activity and Disability; an extremely useful resource to guide you through the process of finding a camp that best meets your child's needs.
Cooling Vest Providers
Heat Relief Depot This company offers a discount to any customer who submits a note from a medical professional stating that the products are purchased for medical reasons. They do make children's phase change cooling vests per special order. Several years ago, they were willing to make a vest for a 20lb toddler. Call for more information.
MScooling This site offers all three vest styles in sizes that range from x-small (20" length from shoulder to waist and 33" torso circ. At the widest point) to xxx-large (25"L, 51"circ)
Tuff Rhino Offers all three vest styles in a variety of sizes
Texas Cool Vest Phase change vest that is adjustable to fit from 6 y.o. child through small adult
Stacool Vest Phase change vest in 2 children's sizes, $200+
North American Pride This company sells a variety of styles and vest sizes; this link leads to an evaporative cooling vest for children
For more information regarding cooling vest styles, articles regarding the usefulness of cooling vests by individuals with temperature dysregulation, and potential sources of financial assistance, please refer to: http://www.mitoaction.org/red-tape/keeping-your-cool-cooling-vest-types-sources-financial-assistance
Disability Information
ADA Portal
Disability rights education & defense fund
Cornucopia of Disability Information
Consortium for Citizens with Disabilities
DisabilityInfo.gov
National Council on Disability
National Organization on Disability
Disability Resources
www.familyvillage.wisc.edu/index.html
Welcome to the Family Village! We are a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.
www.ucp.org United Cerebral Palsy (check "one-stop resource guide" state lists)
www.makoa.org Clearinghouse site created and maintained by a man who has spastic quad and writes with AAC (sip/puff, mouthpiece pointer, voice recognition, eye gaze. Extensive site!
http://www.icdri.org/resource_page.htm List of page after page of every resource imaginable for people with disabilities and health care needs in the US, UK, Canada, and more
http://www.truelocal.com/ Type in "community Services, "Disability Services," a specific disability, etc. and your state for a comprehensive list of available services.
http://www.moddrc.org/sp_dis_search.php Missouri resource clearinghouse, easy to search for national resources by disability and resource category.
http://www.patientadvocate.org/report.php The National Financial Resources Guidebook for Patients
www.primaryimmune.org/resources/resources.htm Immune Deficiency Foundation's site; lots of info about immune def. but also has links to resources: education, advocacy, financial assistance and health insurance, gener health, genetics, and more!
www.healthfinder.gov links to specific disability sites
www.disabilityinfo.gov links to federal and state resources; housing, health care, energy, education, employment, etc.
Education
Toolkit from the office of Special Education
National Center for Learning Disabilities
Accredited Online Colleges and Disability Education
National Information Center for Children and Youth With Disabilities
Office of Special Education and Rehab
Association of Higher Education and Disability
Stop Bullying Now
Employment
Office of Disability Employment Office
Financial Assistance
Financial Assistance Links www.ncsd.org/Link/finhelp.htm
G-tubes and IVs
Oley Foundation
provides information and psycho-social support to consumers of home parenteral (IV) and enteral (Tube-fed) nutrition (homePEN)
Kids with Tubes
Support for parents and caregivers of tube-fed children
Are you having difficulty paying for enteral formula or nutrition supplements? Try this link: http://www.mitoaction.org/red-tape/paying-prescription-formula-thinking-outside-can-part-1
Hopsice/End of Life Issues
Children's Hospice International
"The BabySteps Children's Fund is a non-profit organization offering information and support to bereaved parents and children suffering the loss of a child. BabySteps is named after the baby steps that form thlong and difficult road to recovery from the loss of a child."
www.alivealone.org
Alive Alone is a non-profit organization that publishes a bimonthly newsletter for bereaved parents now childless and networks parents with no surviving children.
Compassionate Friends, Inc.
Compassionate Friends, Inc., is a nationwide nonprofit self-help organization offering support to bereaved parents and siblings after the death of a child
Legal
Disability Rights Commission
www.drc-gb.org/default.aspx
Pro Bono Help in All States
www.ptla.org/links/services.htm
Magazines
www.complexchild.com Monthly e-zine for parents of children with chronic illnesses and disabilities.
www.eparent.com Online archives of Exceptional Parent magazine. The newer issues require a subscription for access, but back issues can be viewed and printed for free. Includes an extensive annual resource directory
http://www.parentingspecialneeds.org
Mitochondrial Disease Organizations and Information
Miracles for Mito
Miracles for Mito’s mission is to ensure that no individual or family has to be alone while trying to understand a complicated mitochondrial diagnosis. Our mission is to improve the resources and information available to individuals and families who are coping with Mitochondrial Disease in the Rocky Mountain Region.
The United Mitochondrial Disease Foundation (UMDF)
The Muscular Dystrophy Association
Mitochondrial is one of the neuromuscular diseases served by the MDA
The Mitochondria Research Society
National Organization for Rare Disorders
Mitochondria Research Portal
Wish Upon A Cure
David P. Campbell Foundation for Pediatric Mitochondrial Disease Research
Rebecca's Guide, Inc.
The Genesis Fund
The Neuromuscular Disease Center
good Mitochondria diagrams
Resources Online Web Pages
Free, personal, private Web pages that help family and friends communicate when someone is facing illness
www.Caringbridge.org
www.Carepages.com
Parenting
MUMS
National Parent to Parent Network is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition
For Parents of children with special needs
www.projectprompt.com
A new way of thinking
www.disabilityisnatural.com
www.childrenwithspecialneeds.com Nice section to download PECS icons, as well as general and specific disability info
www.lydc.org Loving Your Disabled Child; CA-based organization that has an extensive links section
www.childrensdisabilities.info Articles and resources empowering parents of children with disabilities, chronic health issues, and other special needs
www.nathanielshope.org/pages/314.asp Online and some face-to-face programming to provide emotional and spiritual support to children with chronic illnesses and disabilities and their families. Website has an extensive resource section, particularly resources related to recreation such as camps
www.our-kids.org Provides info and support for children with special needs and their families/caregivers. Searchable databank for information and referral, financial, emotional, spiritual support.
www.bravekids.org Bravekids.org helps children with disabilities, chronic, life threatening illnesses and special needs by providing thousands of resources & medical information on childhood conditions, plus message boards to connect children and parents to others sharing similar challenges.
Social Security
Social Security
www.social-security-disability-claims.org
Social Security, Disability and SSI answers
www.disabilitysecrets.com
http://disabilityblogger.blogspot.com.)
Support
Bandaides and Blackboards
about growing up with medical problems
Brave Kids
Brave Kids works to broaden the support and resources available for children who have chronic, life-threatening illnesses or disabilities
Starlight Starbright Foundation
The Starlight Starbright Foundation creates projects that are designed to help seriously ill children and adolescents cope with the psychosocial and medical challenges they face
Sunshine Foundation
The Sunshine Foundation grants dreams for seriously ill, challenged, and abused children
Chai Lifeline
Chai Lifeline is a nonprofit Jewish organization that provides support service programs to children and their families in crisis
Children's Hopes & Dreams Foundation
Eli's Angels
Our Goal is to mail literature to children diagnosed with Leigh's syndrome and other mitochondrial or metabolic disorders
Therapies
Horse Power
Article about equine therapy
Travel
Ronald McDonald Houses
provide a home-away-from-home for the families of seriously ill children who are receiving treatment at nearby hospitals Air Care Alliance
AirLife Line
Air Mercy
American Airlines
Miles for Kids in Need Angel Flight America
Passengers with Disabilities (air travel)
Articles or Personal Web Stories
Heartbeats for MitoAnn, a Mito mom, writes from the heart www.heartbeatsformito.org
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