Where Can Caregivers Find Support?
Caring for a child with a disability can be challenging, even under the best circumstances.
Because children with birth injuries often require specialized care, those taking care of them often experience burnout. This is especially true if the child requires around-the-clock care.
Thankfully, parents and other caregivers can find helpful information and emotional support through support groups, books, podcasts, and other resources. They may also be able to access financial support through government programs, grants, and other options.
This caregivers support guide details some of those resources below.
Support Groups for Caregivers
Support groups provide opportunities for people to share similar experiences, including firsthand information about medical and educational opportunities for children with disabilities.
Depending on your preferences and the support group you choose, meetings can be online or in person. A hospital or community organization in your area may offer a caregiver support program that meets your needs.
Some different support group options are listed below.
- Caregiver Action Network (CAN) educates and advocates for people who care for someone with a disability, chronic illness, or advanced age. Caregivers can access CAN’s Care Chat, which provides a number of forums specific to caregiver needs, such as chats for new caregivers, problems with medical professionals, and life after caregiving.
- Cerebral Palsy Research Network (CPRN) is a collaboration between community members and hospitals. It seeks to improve health outcomes for people with cerebral palsy (CP) through high-quality education, research, and community programming. This organization offers a MyCP forum you can join to connect with other CP caregivers, help advance CP research, and access free wellness programs and content recommendations.
- Federation for Children with Special Needs empowers families so they have the resources and information they need for their children. It focuses on early intervention, transitions, education, and building strong family engagement to support all children. The group’s Family TIES program offers emotional support, information, and training to families with children who have special needs.
- March of Dimes aims to improve wellness and health for new mothers and babies. It has a sprawling network of parents raising children with special needs and expansive online discussion forums.
- National Alliance for Caregiving (NAC) provides free brochures, guidebooks, and studies about caregiving and hosts a searchable article database.
- The Arc is the largest national community-based organization advocating for people with intellectual and developmental disabilities and their families. Caregivers can access information on financial resources, education, and group support through their expansive network.
- The United Brachial Plexus Network strives to unite families concerned with brachial plexus injuries. It provides scientific information, financial resources, and equipment that empowers people with Erb’s palsy to be as physically active as possible. Caregivers can join the UBPN Facebook support group to connect with other Erb’s palsy families.
- United Cerebral Palsy (UCP) seeks to advocate, educate, and provide support resources for people with CP to live happy, healthy lives. For CP caregivers, it provides supportive resources, education, and access to respite care (a break for caregivers) through their Respitality Program. You can find a UCP affiliate near you to learn more.
Magazines and Newsletters for Caregivers
Magazines and newsletters can also encourage caregivers and give them more information about taking care of a child with a disability.
Here are some magazines and newsletters to consider:
- Today’s Caregiver: This magazine website offers newsletters, group forums, a kitchen guide for caregivers, and back issues of magazines.
- ABILITY Magazine: This award-winning magazine seeks to change how the public views people with disabilities. It is also home to the largest job board for people with disabilities.
- New Mobility: This magazine features stories demonstrating how wheelchair users can live fulfilling and rich lives. Article topics include technology, lifestyle, and health.
Financial Support Options for Caregivers
Among so many other stressors, finances are one of the biggest sources of strain on caregivers. Fortunately, there are several government assistance options and foundations that may be able to provide some relief.
Foundation grants are awarded by foundations under specific conditions.
Foundations that help families access birth injury funding include:
- Cerebral Palsy Foundation (CPF) focuses on clinical research to improve the quality of life of people with CP and offers grants to eligible families.
- Children’s Hemiplegia and Stroke Association (CHASA) provides grants and financial assistance to families with a child with a medical need for a hand or foot brace that is not covered by their health insurance.
- United Healthcare Children’s Foundation provides CP grants of up to $10,000 per lifetime and $5,000 annually.
There are several government assistance programs for individuals and families affected by birth injuries and other disabilities, including:
- Children’s Health Insurance Program (CHIP)
- Social Security Disability Insurance (SSDI)
- Supplemental Security Income (SSI)
- Temporary Assistance for Needy Families (TANF)
You can look online to learn more about these programs and see whether your family qualifies for assistance.
Families may also be eligible for government food benefits, such as:
- SNAP (Supplemental Nutrition Assistance Program): Sometimes called EBT, SNAP is a federal program that provides monthly funds for people to buy food.
- WIC (Special Supplemental Nutrition Program for Women, Infants, and Children): This program provides federal grants to states for health care referrals, supplemental foods, and nutrition education for low-income new mothers and infants and children up to age 5 who are at nutrition risk.
Legal Options for Compensation
Sometimes a child’s disability stems from a preventable birth injury. In these cases, parents may be able to file a birth injury lawsuit and pursue compensation for their child’s medical expenses and care.
If you suspect that a doctor’s medical mistake caused your child’s condition, a birth injury lawyer may be able to help. They can determine whether you are eligible to file a medical malpractice lawsuit against the health care providers who harmed your child.
Some families have recovered millions of dollars in compensation from birth injury lawsuits. This money can help pay for medical care, assistive equipment, physical therapy, and other things that can help your child live their best life.
Other Resources for Caregivers
Here are some other resources for parents of children with disabilities, including housing support, transportation services, and more.
People with disabilities may require accessible and affordable housing.
The following websites can help you find information on housing:
- National Directory of State Housing Finance Agencies: This organization offers businesses, families, and individuals a wide range of assistance and support.
- U.S. Housing and Urban Development (HUD) Resources for People With Disabilities: This website offers a complete overview of housing options for people who are differently abled.
Many transportation options exist for people with disabilities.
Here are some resources to help you access transportation for a loved one:
- The Air Carrier Access Act: This federal law prevents discrimination based on disability and requires all U.S. airlines to accommodate the needs of passengers with disabilities. You can learn about your child’s rights during travel here.
- TSA’s Disabilities and Medical Conditions page: This page provides information to help travelers with disabilities through the check-in and screening process.
- UCP’s Travel and Transportation page: This page lists various resources for ensuring safer travel for both adults and children with disabilities.
Additionally, your child may be eligible for early intervention services or special education services. You can ask for more information at your child’s school or through your state’s department of education.
You can also seek information and support from Parent Centers across the nation. These centers help parents participate effectively in their children’s development and education and improve educational outcomes for children with disabilities.