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Spina Bifida

Boundless

Serves: Children, teens, individuals, and families with ID/DD and/or behavioral health challenges.
Provides person-centered care to people with intellectual and developmental disabilities and behavioral health challenges. They offer center and community-based behavioral health services, case management, long-term and temporary residential support, in-home and out-of-home respite services, and day programs. Healthcare services are available at Boundless Health in Worthington, Ohio. Boundless Health provides inclusive care for every age and family member, all in the same carefully-designed facility to support the unique needs of the I/DD community. Health services include behavioral health, primary care, and dentistry.

  • Boundless Health Worthington:
    445 East Dublin-Granville Road, Worthington, Ohio 43085
    (614) 844-3800
  • Newark:
    22 North First Street, Newark, Ohio 43055
    (740) 334-4056
  • West Carrollton:
    700 Liberty Lane, West Carrollton, Ohio 45449
    (937) 247-2400
    Center-Based ABA: (937) 672-1587
  • Mahoning Valley Campus of Care:
    1960 East County Line Road, Mineral Ridge, Ohio 44440
    (330) 596-1042
  • Medina:
    1065 Medina Road, Medina, Ohio 44256
    (330) 596-1042
  • Perrysburg:
    28555 Starbright Boulevard, Perrysburg, Ohio 43551
    (567) 312-4722

(800) 409-2729
iamboundless.org

Casey Cares

Offers palliative programs for families with critically ill children to keep spirits high and make lasting memories. Programs include opportunities for families to enjoy local attractions and outings, surprise gifts for birthdays, new pajamas for children who are homebound or during an extended hospital stay, gift cards for grocery assistance and themed parties for Casey Cares families across the country to meet. Families who have lost a child can continue to receive services for one year and are encouraged to participate in a monthly bereavement support group. Families must complete the online application for services, including medical documentation to be completed by the child’s health care staff.
Ohio Region: 7775 Walton Parkway, New Albany, Ohio 43054
Application Questions: (443) 568-0064
General: (888) 568-0060
caseycares.org

Central Ohio Spina Bifida Alliance (COSBA)

Nonprofit started by parents caring for children with Spina Bifida, COSBA offers support to new families, organized social gatherings, and helps with related financial needs. Visit the website for contact information.
centralohiospinabifidaalliance.blogspot.com

Health Information Websites

The websites below offer helpful health information from reputable sources on topics such as healthy lifestyle, diseases, prevention, and treatment.

  • CDC: Find an A-Z library on health conditions, vaccines, current disease outbreaks, and prevention.
  • Healthy Children: Information on kids health and development, parenting, and more from the American Academy of Pediatrics.
  • KidsHealth and TeensHealth: Tons of important health information throughout the lifespan from Nemours.
  • Mayo Clinic: Find symptoms, treatments, and when to see a doctor for various health conditions. They also have information on clinical trials and resources for professionals.
  • MedlinePlus: Look up drugs, supplements, medical tests, and health conditions from the National Library of Medicine.
  • MyHealthfinder: Offers information on nutrition, vaccines, and health conditions from the Office of Disease Prevention and Health Promotion.
  • MyPlate: Healthy eating and nutrition throughout the lifespan.
  • Oncolink: Information about various types of cancer, treatments, and support from cancer experts.
  • Safe Kids Worldwide: Find safety information and toolkits on a wide range of topics including water safety, car seats, safe infant sleep, medication safety, and more. They also publish a list of recent product recalls, parent guides to safety, and safety laws for professionals.

McLindon Family Foundation (MFF)

Provides free adaptive bikes to children and young adults with conditions like Spina Bifida, Cerebral Palsy, Down Syndrome, Hydrocephalus, Autism, and more. Families may contact the organization directly to start the application process, which includes an application, interview, and letter from the family’s therapist. Wait times vary by state.
8305 Tom Drive, Baton Rouge, Louisiana 70815
(225) 456-3505
mclindonfamilyfoundation.org

Mercy Medical Angels

Provides non-emergency, long-distance ground transportation for patients traveling for treatment. Patients must be ambulatory and meet income guidelines. Patients may receive gas cards, bus, train, or airline tickets. Trips within a local area or community is typically not handled, but exceptions may be made on a case-by-case basis. Visit the website for contact information.
101 West Main Street, Norfolk, Virginia 23510
mercymedical.org

Midwest Genetics Network (MGN)

Works with patients and healthcare providers to help improve access to genetic services for medically underserved populations and those with genetic conditions. Use the Find a Genetic Service page on their website to search for care providers by zip code. The Journey Through Diagnosis website and app provides a detailed guide for families on coping with emotions related to a genetic diagnosis, accessing medical care and support services, navigating insurance, and more.
journey.midwestgenetics.org

National Association for Rare Disorders (NORD)

Helps individuals and families impacted by rare diseases and provides information in English and Spanish. Use the State Resource Center to find programs by state. They have several financial assistance programs to help cover costs of life-saving medication, caregiver aid or respite care, and educational support. The NORD Support Helpline offers help accessing programs from an Information and Resource Services team member. They also have information on joining a clinical trial or study.
NORD Support Helpline: (800) 999-6673
Español: (844) 259-7178
rarediseases.org

Nationwide Children’s Hospital (NCH) Adaptive Sports Medicine Program

Provides individualized treatment for children, adolescents, and young adults with physical disabilities. Services include injury evaluation, rehabilitation, and adaptive athletic training.
Livingston Orthopedic & Surgery Center: 405 Butterfly Gardens Drive, Columbus, Ohio 43215
(614) 355-6000
nationwidechildrens.org/adaptive-sports-medicine-program

Nationwide Children’s Hospital (NCH) Developmental Pediatrics

Provides developmental assessment and treatment services for children under the age of 21 with developmental, emotional, or behavioral concerns. Their team of certified Developmental Behavioral Pediatricians, Nurse Practitioners, and Psychologists can help coordinate services with families, schools, community organizations, and other healthcare providers to meet the individual needs of your child. Developmental evaluations are offered at the Livingston Ambulatory Clinic in downtown Columbus. Additional specialty services such as the Down Syndrome, Williams Syndrome, Spina Bifida, Autism, and Behavioral Health clinics may be offered at their locations downtown or at the Child Development Center in Westerville, Ohio.
Developmental Behavioral Pediatrics Clinic: 380 Butterfly Gardens Drive, Columbus, Ohio 43215
(614) 722-4050
Child Development Center: 187 West Schrock Road, Westerville, Ohio 43081
nationwidechildrens.org/specialties/developmental-and-behavioral-pediatrics/our-clinics

Nationwide Children’s Hospital (NCH) Health Information & Helping Hands

Offers educational materials for parents and caregivers from pediatric experts. Helping Hands are easy-to-read articles on topics including health conditions, caring for medical equipment at home, behavior support, medical tests, and caring for newborns. Visit the Conditions We Treat page for even more information on health conditions A-Z and how to get treatment.
Helping Hands: nationwidechildrens.org/helping-hands
Conditions We Treat: nationwidechildrens.org/conditions

Nationwide Children’s Hospital (NCH) Homecare

Provides a full range of homecare services to Central Ohio children of all ages, from newborns through young adults. Homecare offers the following areas of service:

  • Infusion Pharmacy
  • Pediatric Home Medical Equipment (includes aerosol equipment, wheelchairs and ambulatory supplies, blood pressure kits, apnea monitors, breast pumps, wound care, and more.)
  • Intermittent (Short-Term) Nursing and Private Duty (Long-Term) Nursing
  • Skilled Therapy Services (occupational therapy, physical therapy, speech and language therapy)
  • Hospice and Home-Based Palliative Care services for children with life-limiting illnesses

255 East Main Street, Columbus, Ohio 43215
(614) 355-1100
nationwidechildrens.org/homecare

Nationwide Children’s Hospital (NCH) Occupational, Speech & Physical Therapy Programs

Provides developmental occupational therapy (OT), speech and language therapy, and physical therapy (PT) services. Services are provided at the main hospital and at many clinic locations throughout the community, for children from birth to age 21.
700 Children’s Drive, Columbus, Ohio 43205
(614) 722-2200
Occupational Therapy: nationwidechildrens.org/specialties/occupational-therapy
Speech Pathology: nationwidechildrens.org/specialties/speech-pathology
Physical Therapy: nationwidechildrens.org/specialties/physical-therapy

Nationwide Children’s Hospital (NCH) Physical Medicine & Rehabilitation (PM&R)

Specializes in the diagnosis and management of children with physically disabling conditions. Services include wheelchair and seating evaluations, prosthetic evaluations, spasticity management, electrodiagnosis, concussion clinic, and more.
(614) 722-6200
nationwidechildrens.org/physical-medicine-rehabilitation

Nationwide Children’s Hospital (NCH) Spina Bifida Program

Provides comprehensive, long-term treatment services to children with spinal abnormalities. Children may be served by a variety of specialists, including Developmental Pediatrics, Neuropsychology, Genetics, Occupational Therapy, Social Work, and more.
555 South Eighteenth Street, Columbus, Ohio 43205
(614) 722-5725
nationwidechildrens.org/myelomeningocele-spina-bifida-clinic

Onward Pediatric Therapies

Program: Outpatient, intensive, and group physical and occupational therapy. Services include traditional occupational and physical therapy (PT and OT), intensive PT and OT, PT and OT evaluations, Dynamic Movement Intervention (DMI), spinal stimulation, feeding therapy, sensory & emotional regulation, and social groups. They also offer summer camp with outdoor activities, social groups, sensory play, and more.
Eligibility: Ages 0-18 with neurodevelopmental diagnoses (Such as cerebral palsy, autism, down syndrome, spina bifida, genetic disorders, sensory processing delay, or feeding disorders).
Cost: Fee-for-service only. They do not accept insurance, Medicaid, or waivers.
Referral: Families refer themselves and schedule appointments online.
Located inside Be Well Collective: 3246 West Henderson Road, Columbus, Ohio 43220
onwardpediatrictherapies.com

Oracle Health Foundation

Provides financial grants to help cover costs related to children’s healthcare needs. Grants are provided for clinical costs, equipment costs, displacement, or vehicle modification. Examples of expenses covered include lodging and transportation related to a child’s care, clinical procedures, medicine, care devices/medical equipment, and assistive equipment. The grant recipient must be 21 years of age or younger, be under the care of a physician, and have no existing insurance coverage for the requested expenses. Families may request funds once per 12 months, with a maximum of three times in a child’s lifetime. Visit the website to complete an application.
(816) 573-6050
oraclehealthfoundation.org/pediatric-grants

Southeastern Ohio Center for Independent Living (SOCIL)

Assists people of all ages with disabilities to live more independently. The majority of their board and staff are people with disabilities assisting others. They provide information and referrals for housing, education, transportation, benefits, and other community resources. The Assistive Technology program loans eating utensils, screen readers, magnifiers, autism sensory items, and more. They also offer free group living skills classes and support for youth with IEPs. Call to report ADA violations in Fairfield and Hocking counties.
Fairfield County: 418 South Broad Street, Lancaster, Ohio 43130
Hocking County: 96 West Hunter Street, Logan, Ohio 43138
(740) 689-1494
socil.org

The Perlman Center for Cerebral Palsy (Assistive Technology)

Provides care for children, adolescents, and adults with cerebral palsy, muscular dystrophy, spina bifida, spinal cord injury, and other neuromuscular disabilities at multiple locations through Cincinnati Children’s Hospital. Services include case management, occupational therapy, speech therapy, and early childhood integrated therapies. They also provide comprehensive assistive technology evaluations for all ages.
(513) 636-4601
3333 Burnet Avenue, Cincinnati, Ohio 45229
5642 Hamilton Avenue, Cincinnati, Ohio 45224
9560 Children’s Drive, Mason, Ohio 45040
cincinnatichildrens.org/service/a/aaron-perlman-center

United Cerebral Palsy (USP)

Serves children and adults with disabilities in the greater Cleveland area. Services include occupational therapy (OT), physical therapy (PT), speech-language therapy, educational day programs, summer camps, adult day services, and assistive technology assessments.
10011 Euclid Avenue, Cleveland, Ohio 44106
(216) 791-8363
ucpcleveland.org

UnitedHealthcare Children’s Foundation (UHCCF)

Provides medical grants for families to pay for healthcare services related to a major medical condition that are not covered by their family’s insurance plan. Children must be 16 years old or younger, be a U.S. citizen, and have coverage through a commercial health plan to qualify for a grant. Families must meet income eligibility requirements. Applications must be submitted on a computer, not phone or tablet. Visit the website for a full list of requirements and for application instructions.
(855) 698-4223
uhccf.org

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