Resources for special equipment and patient care – (United States)

In addition to connecting with us on Social media and joining the Facebook groups available, US families can also find a wealth of resources below to help you support your ATR-X Warrior

Find Financial Assistance for individuals with ATR-X syndrome:

MEDICAID

Medicaid insurance (if you already have insurance you can use as supplemental to eliminate copays), respite care (skilled and unskilled), and more.

Medicaid covers care for children with disabilities, typically under Medicaid waivers specific to each state.

Visit KidsWaivers or your state’s Medicaid agency to learn about programs where you live.

MEDICARE

Better known as insurance for older Americans, Medicare also covers some younger people with disabilities. If you qualify for Social Security disability benefits, you can enroll in Medicare Part A, which covers hospitalization, and Part B for doctor visits and medical equipment.

SOCIAL SECURITY DISABILITY BENEFITS

The Social Security Administration provides cash benefits for children with disabilities and adults who became disabled before age 22 via Supplemental Security Income (SSI). SSI may be used for food, clothing and housing.

Applying and qualifying for SSI or SSDI requires an extensive process, and your child must meet clinical criteria.

Support for Parents of Children and With Disabilities: 

  • Academy of Special Needs Planners: This organization of professionals serves and advises people and families with disabilities. It includes information on legal developments and a forum for exchanging best practices and providing information for consumers with disabilities.
  • AllAboutATRX.com: A website put together by parents of an ATR-X kiddo that give perspective on how to live with ATR-X. Find suggestions for equipment to make day to day activities easier, toys, etc. 
  • The Arc Center for Future Planning: This guide is for people with intellectual or developmental disabilities to enable them to live as independently as possible after their parent or caregiver is no longer able to care for them.
  • The ARC of the United States: ARC’s advocacy efforts are aimed to promote a future of inclusive play, work, worship, community, travel and more for individuals who have intellectual or other disabling conditions. Their website offers information about current activities, links to ARC chapters in all states, and ways to become involved.
  • Center for Parent Information and Resources: This site provides information about critical topics in special education and links to each state’s parent training and information center, which are federally funded programs to help parents navigate this complex system.
  • Council of Parent Attorneys and Advocates (COPAA): Composed of families, special education attorneys and advocates across the country, COPAA takes cases that will advance education law for families, provides training for parents to advocate in their processes or to become special education advocates themselves and supports the rights of families with kids in special education.
  • Courageous Parents Network: This network empowers families and providers caring for children with serious illnesses by providing videos, podcasts and printed guides.
  • Family Voices: This family-led organization promotes partnerships at all levels of health care and aims to improve health care services and policies at all levels.
  • Kids’ Waivers: This site provides information on state Medicaid waivers and other programs for children with disabilities or medical needs. It includes program details and state-specific details.
  • Organization for Autism Research: This organization provides resources for advocates, families and educators, including information, scholarships for students with autism and research grants.
  • Parent to Parent USA (P2P): P2P oversees a network of parent-to-parent programs across the country that offer emotional support to parents from trained volunteer support parents.
  • Parents Reaching Out (PRO): provides support, training and tools for families and youth with disabilities or complex medical needs
  • Special Education Legal Fund (S.E.L.F.): Created to help families effectively advocate for their child in the special education system, this funding source provides up to $5,000 in grants to cover qualifying special education legal fees for families in Connecticut and education for agencies supporting families with children with disabilities.
  • Special Needs Alliance: Long-term financial planning is complex for families, particularly around issues related to a loved one’s disability. This site offers information about government programs, ABLE accounts, special needs or supplemental trusts, condition-specific organizations and related information.
  • Understood.org: This organization provides a wealth of resources for parents, including template letters to request an individualized education program (IEP) and guidelines for approaching getting support for kids with learning and thinking differences.

Grants for Equipment and More:

MY GYM FOUNDATION:  A non-profit that helps provide equipment for children in need. Visit the website for an application.  LINK HERE

Wheelchairs 4 Kids: Wheelchairs 4 Kids provides wheelchairs, home and vehicle modifications as well as other assistive and therapeutic devices for children that have limited mobility due to illness, accident or abuse. It is our goal to allow all kids to participate in life fully.

Services provided:

– Wheelchairs
– Gait trainers
– Ankle-foot orthosis (AFO’s)
– Hoyer lifts
– Bathing solutions
– Vehicle modification
– Home modifications

Parents, relatives, teachers, therapists, social workers, medical personnel, etc can provide referrals. If you know of a child that may benefit from our services, please visit the refer a child page and send us the information.

Giving Angels Foundation: Funds are awarded on a case by case basis with preference given to lower income and single parent families. Families who wish to receive assistance must complete an application and submit required supporting documents.

Huckleberry Foundation: One of the main goals of The Huckleberry Foundation is to provide direct assistance to families with special needs children. We accept applications from families in need of financial assistance for their family member(s) with special needs. Eligible applicants have a family member or members medically diagnosed with a disability such as autism spectrum disorder, Down syndrome, fragile X syndrome, etc. You are welcome to apply for funds for anything that will directly improve the life of your special needs child.

Friends of Man: Grants for therapy, equipment, and other needs. Must have a sponsor such as an agency or social worker apply.

Interactive Technology Assisting Autistic Little Kids: itaalk provides interactive technology to children (0-22) with an Autism Spectrum Disorder, and educational training on interactive technology to families, educators, and service providers of children with special needs.

Joni And Friends: The Christian Fund for the Disabled is a modest grant program administered by Joni and Friends. CFD provides one-time grants to qualifying individuals in cooperation with (i.e., endorsement by) churches or Christian organizations.

Different Needz Foundation: Gives grants to people with developmental disabilities for equipment, therapy, and more.

Fund it Forward: Helps families raise money for their children. They also have grants for adaptive equipment and supplies not covered by health insurance.

Pediatric Illness Support Network by Chai-Life Line: Chai Lifeline truly is a local organization meeting the emotional, social, and financial needs of seriously ill children and their families. We help when families need us most by assigning a case manager who stays with the family for as long as the family needs our assistance. These relationships endure for years. Service: Case management

In addition to professional case management we offer Big Brothers and Big Sisters, special events, sibling programs, advocacy and information, insurance support services, counseling, meals and hospital visits, retreats and family respite vacations, family days, and holiday parties, tutoring, crisis intervention and bereavement services. Chai Lifeline understands that serious illness impacts the entire family. Therefore our programs are geared towards everyone and services are developed to meet the changing needs of our families. All Chai Lifeline programs and services are available free of charge. Call us for more information or if there is a family that needs our help.

Family Support Services by Neighbors Link: The Family Support Services program provides medical, legal and social service assistance and referrals that connect families and individuals to community-based resources to address critical needs and provide vital solutions to help stabilize their lives in times of crisis. This program provides information and referral to community services.

Healthwell Foundation: Pediatric Financial Assistance Fund: The HealthWell Pediatric Assistance Fund® is specifically designed to provide financial assistance to eligible families so their children can start or continue critical, often life-saving medical treatments, they desperately need. This unique fund assists children 18 years old or younger living with chronic or life-altering conditions that their families are struggling to treat due to cost.

Diagnosis-Based Assistance Programs for Chronic/Serious/Life Threatening Illnesses-Children– Find help with cost of medicine.

UnitedHealthcare Children’s Foundation: Please review the list of medical items/services exclusions. Applications that include one of these items will NOT be eligible for funding.

HealthWell: The HealthWell Foundation is a leading independent non-profit dedicated to improving access to health care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses

First Hand Foundation: First Hand Foundation is a public 501(c)(3) organization that provides funding for individuals and children, both domestically and globally who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care. In recent years, we have created a range of programs with a preventative approach, working with wider populations through schools and community settings to identify health issues before they become critical, to promote healthy behaviors and to empower individuals to take charge of their health. Funding and Case Grant questions: firsthandfoundation@cerner.com

Canine Companions:Canine Companions is a national organization that enhances the lives of people with disabilities by providing highly trained service dogs at no charge to the recipient.

MAKE A WISH: Get a wish for your child granted! Must be 2 ½ or older to apply. LINK HERE

FREE LIFETIME NATIONAL PARK PASS: LINK HERE

Head-to-toe Resources to support your ATR-X Warrior:

FEEDING TUBE:

BLENDTEC FINANCIAL ASSISTANCE PROGRAM: Call Blendtec @ 1-800-748-5400 and ask about their application for financial assistance to purchase a discounted blender in order to begin a blended diet for your child. Refurbished blender comes to around $50. 

FEEDING TUBE AWARENESS FOUNDATION: LINK HERE

FEEDING THERAPY APPROACHES/COURSES:

SOS APPROACH TO FEEDING: LINK HERE

MELANIE POTLUCK: An SLP that has written books, offers courses, has a YouTube channel, and makes simple graphics on her social media accounts with tips for feeding LINK HERE

THRIVE SPECTRUM PEDIATRIC TUBE WEANING/FEEDING PROGRAM: Based out of VA, they assist in feeding therapy and have a tube weaning program. They can travel to you and do therapy remotely. LINK HERE

GROWING INDEPENDENT EATERS TUBE WEANING PROGRAM: LINK HERE

NO TUBE (TUBE WEANING PROGRAM): LINK HERE

EOSINOPHILIC DISORDERS:

CINCINNATI EOE CLINIC: LINK HERE

CHILDREN’S HOSPITAL OF PHILADELPHIA (CHOP): LINK HERE

FACEBOOK GROUP EOSINOPHILIC FAMILY NETWORK: LINK HERE

FACEBOOK GROUP EOSINOPHILIC ESOPHAGITIS SUPER MOMS: LINK HERE

FACEBOOK GROUP EOE PEDIATRICS GROUP: LINK HERE

SPEECH AND LANGUAGE THERAPY:

APRAXIA SONG ON YOUTUBE, FREE PRINTABLE: Sing this song everyday while showing large photos for working on sounds, labeling, comprehension, etc.  See VIDEO HERE. GET PDF HERE.

TOBII DYNAVOX: Communication devices (offer trials), free courses, ipad apps. LINK HERE

COUGH DROP: AAC app –  2-month free trial, then $6 per month subscription or a $200 lifetime purchase option.  LINK HERE

PRC: Communication devices (offer trials), free courses. iPad apps. LINK HERE

DENTAL CARE:

. HERE is a good RESOURCE Article for help with challenges related to dental care.

PHYSICAL THERAPY:

THERATOG: Orthotic undergarment and strapping products that give individuals with sensorimotor impairment a highly effective modality for improving postural alignment, stability, movement skill, precision, joint stability, and prolonged muscle stretch. LINK HERE

SPIO SUIT: Aids with shoulder/trunk and hip stability, postural control, balance, coordination, and increased body awareness. LINK HERE

INTENSIVE PHYSICAL THERAPY PROGRAMS:

Cuevas Medek Therapy: LINK HERE

SMILE Therapy for Kids (Canada): LINK HERE

Napa Center: LINK HERE

VISION & HEARING:

  1. ROMAN (CVI) Perkins School for the Blind: LINK HERE FOR WEBSITE – LINK HERE FOR INSTRUCTORS

LITTLE BEAR SEES: LINK HERE

PATHS TO LITERACY: LINK HERE

FACEBOOK GROUPS: Cortical Vision Impairment Awareness: LINK HERE, Cortical Vision Impairment Professionals: LINK HERE, Cortical Vision Impairment DIY: LINK HERE

WONDER ONE LIGHT TABLE LINK HERE

BEST HEARING HEALTH TIPS LINK HERE

VISION (CVI) APPS:

PEAK-A-BOO BARN: Great app for teaching cause and effect, visual coordination, following directions, naming farm animals, encouraging imitation of farm animal sounds, impulse control, core words like “open” or “go”, work on greetings, requesting, literary skills like inferencing LINK HERE; VIDEO HERE

POGG: An interesting green creature that provides animated video clips of actions. LINK HERE ; VIDEO HERE

CAMPS and RESPITE

Hole in the Wall Gang Camp – The Hole in the Wall Gang Camp was founded in 1988 by Paul Newman to give every child – no matter their illness – the chance to “raise a little hell.” Through a variety of year-round programs offered onsite, in hospitals and clinics, and right in camper homes and communities, we serve more than 20,000 seriously ill children and family members each year.