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Growing Up with Health Problems

*Puberty Resources for Developmental Disabilities

Children with autism or other developmental disabilities may require extra time to learn and prepare for the physical, social, and emotional changes that occur during puberty. Being proactive in these discussions can decrease the likelihood of inappropriate sexual expression, increase safety, and help children foster a healthy relationship with their bodies. Use the free, downloadable toolkits below to get started.

A Kid Again

With chapters across the county and throughout Ohio, A Kid Again provides family adventures for families raising a child with a life-threatening condition. Adventures are held year-round at destinations like theme parks, sporting events, and museums, and are completely free. Children must be 0-20 years old with a life-threatening diagnosis such as (but not limited to) cancer, epilepsy, cystic fibrosis, spinal muscular atrophy, or congenital heart defects. They have chapters in central, northern, and southwest Ohio. Families can visit the website to enroll.
777-E Dearborn Park Lane, Columbus, Ohio 43085
(614) 797-9500
AKidAgain.org/Ohio

Arthritis Foundation

Supports individuals living with arthritis through science, advocacy, resources, and community. Their website has great information on types of arthritis (including juvenile arthritis), treatments and medications, navigating insurance, finding a doctor, and healthy living interventions. Their Helpline is staffed by licensed social workers to help callers find support and resources Monday through Friday. They also offer virtual Peer Support Groups and educational webinars for families and healthcare providers.
Helpline: (800) 283-7800
arthritis.org

Center for Courageous Kids (CCK)

Offers free summer camps and family retreat experiences for seriously ill children, in a safe, medically supervised environment. Medical care is provided by volunteer physicians and nurses coordinated by a full-time medical director. They provide camps for kids with asthma, cancer, cerebral palsy, diabetes, blood disorders, muscular dystrophy, sickle cell, spina bifida and more.
1501 Burnley Road, Scottsville, Kentucky 42164
(270) 618-2900
courageouskids.org

Do It For the Love – Music Wish Grants

Supports music therapy, research, and provides live music experiences. They provide Wish Grants for people with life-threatening illnesses or children with severe challenges (such as disabilities or trauma). Family members, close friends/colleagues, or medical professionals can nominate someone for a Wish Grant. Nominations must include diagnosis confirmation. Visit the website to apply for a Wish Grant or contact the organization.
DoItForTheLove.org

Do More Foundation

Offers financial assistance for families who need financial help due to their child’s medical needs. Includes help with utility/rent bills, meal expenses while at the hospital, gas expenses for travel to and from hospital or doctor visits, non-covered medical expenses, non-covered supplies that would aid the child in their treatment and funeral expenses related to the death of a child. Go online for additional contact information and to apply for assistance.
PO Box 1981, Pompano Beach, Florida 33061
(954) 857-9059
TheDoMoreFoundation.org

Dream Factory

Healthcare providers can refer their patients, ages 3-18 with a chronic illness or disorder, to this national program which offers to help make a child’s dream/wish come true. Visit the website to complete a referral.
(502) 561-3001
dreamfactoryinc.org

Easterseals Central & Southeast Ohio

Serves: Children and adults with developmental disabilities.
Provides comprehensive health services for children and adults living with disabilities. Services in Franklin County include early childhood intervention for ages 12-36 months, Chance to Dance free dance classes for families, Long-Term Care Ombudsman for long-term care support, and summer day camps for children. Adult day services are available in Lawrence, Medina, Ross, Scioto, and Summit counties.
3830 Trueman Court, Hilliard, Ohio 43026
Long-term Care Ombudsman: (614) 345-9198
All other services: (614) 228-5523
Easterseals.com/CentralOhio

Flying Horse Farms (FHF) Camps for Kids With Serious Illnesses

A medical specialty camp providing transformative experiences for children with serious illnesses and their families, free of charge. Campers range from 7-21 years old and have diagnoses including cancer, heart conditions, rheumatologic diagnoses, blood disorders, lung conditions, gastrointestinal disorders, craniofacial diagnoses, spinal cord diagnoses, and mental health conditions. Campers are given the opportunity to embrace new experiences like exploring the ropes course, archery, and swimming. Professionals can find opportunities to volunteer as camp counselors, kitchen crew, and medical and psychosocial team members. Families must visit the website and apply to attend camp.
5260 State Route 95, Mount Gilead, Ohio 43338
(419) 751-7077
flyinghorsefarms.org

Make A Wish Foundation of Ohio, Kentucky & Indiana

Grants wishes for children diagnosed with critical illnesses. Children must be between the ages of 2-18 and not have received a wish from another wish-granting organization. Parents, family members, and professionals can refer a child by completing the form on their website.

  • Central Ohio and Chapter Headquarters: 2545 Farmers Drive, Columbus, Ohio 43235
    (614) 923-0555
  • Northern Ohio: 6060 Rockside Woods Boulevard, Independence, Ohio 44131
    (216) 241-3670
  • Southern Ohio: 4500 Cooper Road, Cincinnati, Ohio 45242
    (513) 745-9474

Chapter website: Wish.org/OKI
National website: Wish.org

Mid-Ohio Board for an Independent Living Environment (MOBILE)

Empowers and advocates for individuals and veterans with disabilities. Services include referrals to community organizations and service providers, peer support, living skills classes, and transition services for youth or individuals transitioning to community-based residences. The Equipment Loan Program offers medical equipment and assistive devices. Visit the website to request an appointment for services.
1829 East Long Street, Columbus, Ohio 43203
(614) 443-5936
mobileonline.org

National Organization 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) Fertility & Reproductive Health Program

Supports patients who may be at risk for long-term fertility or reproductive issues due to medical conditions or treatments. Services include education, counseling, and fertility preservation options.
700 Children’s Drive, Columbus, Ohio 43205
(614) 722-8870
Nationwidechildrens.org/Fertility-Reproductive-Health

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) Support Groups

Support groups at NCH can connect you with other families and resources in your time of need. Call for more information about program specifics. Not all programs are listed online, call Case Management Team if you are interested in finding a group that suits your family’s needs.

  • Adolescent & Adult Congenital Heart Disease Online Community
    (614) 722-5622
  • Bariatric Surgery Patient Support Group
    (614) 722-5949
  • Cleft Lip and Palate Support Group
    (614) 962-6366
  • Celiac’s Gluten Free Gang
    (614) 722-3093
  • Endocrinology Patient and Parent Focus Group
    (614) 722-6325

700 Children’s Drive, Columbus, Ohio 43205
Case Management Team: (614) 722-6300
nationwidechildrens.org/family-resources-education/support-groups

Nationwide Children’s Hospital (NCH) Transitional Care

Teenagers face many confusing life transitions, including transitioning from pediatric care to adult healthcare. This transition is especially important for individuals with chronic health conditions. NCH has several programs to support families with transitional care:

 

Nemours KidsHealth and TeensHealth

These websites offer important health information for kids, teens, and their parents from health experts. Kids can find fun videos on how the body works and approachable answers to questions like, how do casts work? The teen website covers topics like depression, sexual health, smoking, coping with cliques, binge drinking, body image and much more. Parents can find medically-reviewed articles on how vaccines work, how to choose a car seat, developmental milestones, supporting kids’ emotional wellbeing, healthy eating, and more. Educators can also find free health-related lesson plans for PreK-12.
Kids: kidshealth.org/en/kids
Teens: kidshealth.org/en/teens
Parents: kidshealth.org/en/parents
Educators: kidshealth.org/classroom

Paths to Literacy for Blind or Visually Impaired Students

A resource hub for parents, families, and professionals focused on fostering literacy skills in children who are blind, deafblind, or visually impaired. Browse the website to find helpful information, fun family activities to try, curriculum ideas, helpful apps, and more.
PathsToLiteracy.org

Ronald McDonald House Resource Link (Formerly Red Treehouse)

Online resource directory supporting families and children with life challenges, disabilities, and healthcare needs from prenatal to age 25. The website helps families find resources such as special education, legal support, financial support for rare diseases, and more. Users can search for resources by need or medical condition.
RonaldMcDonaldHouseResourceLink.org

Sesame Street in the Communities

Provides fun and educational resources for families from the child educators behind the Sesame Street show. Topics range from ABCs & 123s to tough topics that affect children’s lives; including health and wellness, social-emotional skills, trauma, race, grief, and more. They offer free videos, games, and worksheets for children to explore; and resources for parents and educators.

Sesame Workshop Resources for Families Website: sesameworkshop.org/resources
Kids’ Website: sesamestreet.org/home

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. Services include peer support, independent living skills training, adaptive sports and wellness, help with youth school transitions, and referrals to 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. Services are free to anyone with a disability in the Southeast Ohio region. They serve Athens, Fairfield, Hocking, Jackson, Meigs, Morgan, Perry, Vinton, and Washington counties.
418 South Broad Street, Lancaster, Ohio 43130
(740) 689-1494
SOCIL.org

The Butterfly Pig

Offers research-backed, inclusive medical toys for purchase to empower kids through play. The toys can help reduce medical fear and boost self-esteem for kids with a variety of medical conditions. Products include miniature replicas of medical devices like hearing aids or insulin pumps that kids can use with their favorite dolls or stuffed animals. Families may be able to get reimbursement or coverage through FSA/HSA funds.
thebutterflypig.com

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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