Welcome to the St. Mary’s Healthcare System Resource Directory
This resource directory is for families/caregivers of children who have medically complex needs or long-lasting conditions that require extra health care and support services.
The information in this directory is provided to help you find resources to assist you with finding help for your child and family. The range of care/disability/health issues varies amongst children so the information may or may not pertain to your child.
What you'll find
After a family learns that their child is ill parents/caregivers typically begin to think about how they can best care for their child. The resources in this directory include agencies, service providers, advocacy organizations, and other resources to assist with providing a quality life for children with medically complex needs.
To find a resource enter your area of interest in the search box on the side bar and the location in the box located on the top of the screen. The directory is intended to assist you with being the best advocate for your child. Although we attempt to keep the directory current resources change constantly.
Got it!Category: MEDICAL SUPPORT
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Aarons Tracheostomy Care tracheostomy.com
Tracheostomy.com (Aaron’s Tracheostomy Page) is an independent nonprofit project that is family run, family centered and impartial. Every attempt is made to provide information that follows accepted standards of care for pediatric tracheostomy care in a home setting. This information is free of charge and provided without annoying advertisements
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American Association of Kidney Patients aakp.org
The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease
Contact Information
813-636-8100 Phone
800-749-AAKP Toll-FreeAddress
AAKP 2701 N. Rocky Point Drive Suite 150 Tampa, FL 336
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American Speech and Hearing Association asha.org
The American Speech-Language-Hearing Association is committed to ensuring that all people with speech, language, and hearing disorders receive services to help them communicate effectively. Here you will find resources to help you understand communication and communication disorders – See more at: http://www.asha.org/public/#sthash.z8uNAGXJ.dpuf
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Association for Neurologically Impaired Brain Injured Children (ANIBIC) anibic.org
Offers a broad range of services for children, as young as 5, and throughout adulthood, who have an injury to the brain.
Contact Information
Phone: 718-423-9550
Email: mail@anibic.org
Address
61-35 220th Street, Oakland Gardens, NY 11364
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Back in Action backinaction.drnj.org
The goal of Back In Action is to put equipment that is not currently being used into the hands of someone who can benefit from it. Back In Action is primarily for residents of New Jersey, although we do accept entries from neighboring states.
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Brain Injury Association NYS- The Family Advocacy Counseling and Training Services Program (FACTS) bianys.org
If you or a member of your family sustained a brain injury prior to the age of 22 and you live in New York State, a FACTS Coordinator can help you!
Contact Information
Carmen Garcia - Email
Counties: Nassau & Suffolk
(631) 423-1058Ellie Bibawy, CBIS - Email
Counties: NYC Region (Bronx & Queens)
(718) 234-3586Jan Wollney, CBIS - Email
Counties: NYC Region (Brooklyn & Staten Island)
(718) 356-2851 -
Brain Injury Association of New York State (BIANYS) bianys.org
Advocates on behalf of individuals with brain injuries and their families, and promotes prevention. Provides education, advocacy, and community support services that lead to improved outcomes for children and adults with brain injuries and their families. Provides a toll-free Family Help Line, chapters & support groups.
Contact Information
518-459-7911
Family Help Line: 1-800-444-6443 or 1-800-228-8201
Address
10 Colvin Avenue, Albany, NY 12206
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Brave Kids bravekids.org
Website has information on children’s illnesses and disabilities, message boards for parents & kids and a resource guide that you can search by zip code.
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Cecily’s Closet cecilyscloset.org
Cecily’s Closet makes belly bands (fabric wraps with Velcro) for children with feeding tubes. The wraps are designed to protect the Mickey Button or PEG tube that is inserted into a child’s abdomen for the purpose of feeding. These simple, fabric wraps enable a child to safely proceed with physical therapy because they protect the site from rubbing. They offer parents peace of mind by preventing the child from grabbing the tube site and reduce the risk of the tube being dislodged. Comfy for kids; priceless for parents; For families outside of San Diego, we encourage a nominal $15.00 donation to cover fabric and shipping costs.
Address
270-F N. El Camino Real #457 Encinitas CA 92024
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Center for Discovery thecenterfordiscovery.org
Pediatric residences are home to children from the age of 5 to 21. The Center’s beautiful pediatric campus is shaped by this ideal, and includes an outdoor learning environment, creative classroom spaces and comfortable residences. On-site medical, physical, and psychological support is administered through clinics for primary medicine, dental services, neurology, orthopedics, psychiatry, podiatry and many more specialties.
Contact Information
Admissions 845-707-8889
Address
The Center for Discovery 641 Old Route 17 Monticello, New York 12701