USA Resources
Medical Equipment
Free Wheelchair ramp installation
Hatchback’s shoes that fit over AFO’s
Information and Social Support
American Society for Deaf Children – Committed to empowering diverse families with deaf or hard of hearing children and youth by embracing full access to language-rich environments through mentoring, advocacy, resources, and collaborative networks.
Be Not Afraid – (BNA) Provides comprehensive case management to parents carrying to term following a prenatal diagnosis. Strive to develop a relationship of trust while providing for the emotional and tangible needs of parents at diagnosis, during pregnancy, at birth and during the post postpartum period for up to one year. Follows the ethical teaching of the Catholic Church but serve parents of all denominations.
Center for Parent Information and Resources (CPIR) – Offers information and connections to the full spectrum of disabilities in children, including developmental delays and rare disorders.
Chromosome Disorder Outreach – Up-to-date articles, an Ask the Doctor program, and a detailed database registry. Publishes periodic newsletters, provides access to research opportunities as well as interaction with our medical advisory board. Offers connections with others who are coping with the same or similar chromosomal diagnosis through personalized networking programs.
Complex Child – Free online magazine written by parents of children with special healthcare needs and disabilities. Provides medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.
International Trisomy Support Groups and Contacts – Volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18. Offers trisomy 13 and trisomy 18 support groups, physicians and other professionals, information to enable parents to make informed decisions on behalf of their children, and to be a mechanism for sharing between groups.
National Organization for Rare Disorders – (NORD) A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. Information on chromosome 18 ring, 18q-, tetrasomy 18p, and 18p- can be found on their website.
NIH Genetic and Rare Diseases Information Center (GARD) – Current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish. Information on chromosome 18 ring, 18q-, 18p-, or 18p and q duplications can be found on their website.
PACER Center – Provides individual assistance, workshops, publications, and other resources to help families make decisions about education and other services for their child or young adult with disabilities. PACER’s National Bullying Prevention Center® provides resources designed to benefit all students, including those with disabilities. They offer a page of resources that pertains to the top ten concerns of parents with special needs children.
Palliative Care, Perinatal Palliative Care, and Hospice – Information on Palliative Care, Perinatal Palliative Care, and Hospice
Parent to Parent USA – Support a national network of Parent to Parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.
The M.O.R.G.A.N. Project – (Making Opportunities Reality Granting Assistance Nationwide) Volunteers dedicated to promoting awareness and facilitating support of parents caring for their children/young adults with special health care needs. Offers a large library of resources as well as assists families with travel expenses for medical treatments and gifts of medical equipment that aren’t covered by insurance, such as wheelchairs.
Tracking Rare Incidence Syndromes – Information about long-term survival, positive surgical outcomes and achievement of developmental milestones for children affected by rare, trisomy conditions.
When in the Hospital – Tips for a Safer Hospitalization – Information on hospitalization such as life support orders, DNR orders, discharge, and more
Youth as Self Advocates (YASA) – A national advisory board of teen and young adult leaders with disabilities that offers various resources around the country.
Government Programs
Government and Local Disability Programs and Services – Various government and local programs to help those affected by a disability with their daily life. Information regarding housing, jobs, health care, transportation, etc.
Disability Ticket to Work Program
Job and Education Information for People with Disabilities – Employment resources on how to find a government job or prepare for a job interview, information on employment laws and how to file a workplace harassment or discrimination complaint, description of educational programs for students with disabilities.
Financial/Health Care Support
HealthWell Foundation – Dedicated to improving access to care for America’s underinsured. When health insurance is not enough, they fill the gap by assisting with copays, premiums, deductibles, and out-of-pocket expenses.
Mission of Mercy – Provides free healthcare, free dental care and free prescription medications to the uninsured, underinsured and those who “fall through the cracks” of our healthcare system.
National Disability Rights Network – Organization for the federally mandated, Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). There is a P&A/CAP agency in every state and U.S. territory as well as one serving the Native American population in the four corners region. The P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.
North American Consultants – Review medical bills in order to advocate for their reduction on your behalf. Charges are reviewed by an in-house billing specialist to determine if they are in line with current National Fee Guidelines and report accordingly. Another option is to have their negotiating team attempt to negotiate an agreed settlement with the provider to reduce the total amount due.
The PAN Foundation – Dedicated to helping federally and commercially insured people living with life-threating, chronic and rare diseases with the out-of-pocket costs for their prescribed medications.
Special Needs Alliance – Organization of attorneys committed to the practice of disability and public benefits law. SNA connects families with nearby attorneys who focus their practices in the disability law arena covering special needs trusts and wills, Medicare, SSI, estate and tax planning, personal injury, health care, financial planning, guardianships, and conservatorships.
United Healthcare Children’s Foundation – Offers timely financial support to families, UHCCF grants help with medical expenses not covered, or not fully covered, by their commercial health insurance.
United Way – Focus on education, financial stability and health, the building blocks for a good life and a strong community. By mentoring youth through financial workshops, providing individuals with job-skills training and securing housing for struggling families, we are helping people get back on their feet.
Financial Assistance
Catholic Charities – Provides affordable housing, access to healthy food, pregnancy services, and disaster relief services.
Gradient Gives Back Foundation – Awards a full year of mortgage or lease payments to families. The foundation hopes to relieve families of the significant monthly obligation of a mortgage or lease payment, thus alleviating anxiety and helping the family regroup and prepare for the future. This allows families to dedicate time and resources to things such as an in-depth job search or getting caught up on medical expenses.
National Assistance League – Each chapter exists to serve the unique needs and challenges of their community. Funds serve local needs, and services are locally designed, organized and carried out to fit these needs. The national organization supports, trains and monitors chapters to assure they function to the best standards of nonprofit governance. We are 120 chapters united in purpose and dedicated to making local lives better.
NetWish – Looks to provide direct and immediate assistance to families and individuals who desperately require a modest helping hand. Their specific focus is how the aid will benefit children, older adults and other vulnerable members of our community.
Other
Angel Flight East – Provides free flights out of the Northeast to individuals requiring crucial medical care at distant facilities. Additional services include the delivery of supplies to disaster areas and other compelling needs.
Perfectly Preemie – An American clothing store for premature infants.