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.
Books for Caregivers
Besides caregiving support groups, there are many books that may be helpful for people raising children with special needs. These books can provide important information on the child’s condition or help people understand what it’s like to live with a specific disability.
Some books that may be helpful include:
- Home Management of Erb’s Palsy by Priya Reddappa: This concise, practical book is for parents, practicing pediatric therapists, and caregivers. It provides details about the causes of Erb’s palsy and lists exercises for helping your child.
- Parenting a Child With Autism: A Modern Guide to Understand and Raise Your ASD Child to Success: This book explains what life is like from an autistic child’s point of view and looks at treatments to help reduce symptoms.
- The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver by Donna Thomson, Zachary White, and Judy Woodruff: This book addresses a wide range of challenges facing caregivers, such as emotional exhaustion, isolation, and toxic stress.
- We’re Stronger Than We Look: Insights and Encouragement for the Caregiver’s Journey by Jill Brown: This book offers a firsthand account of stories from a caregiver, as well as support, encouragement, and recognition of the need for caregivers to take care of their own needs as well.
Many other books are available for families raising children with special needs. You can search for titles on the internet or ask for book recommendations at your local library. Members of a support group for caregivers may also have helpful recommendations.
10 Podcasts for Caregivers
If you don’t have the time or energy to read books, consider listening to podcasts. Like books, podcasts are a good way to obtain the latest scientific information and get mental health and caregiving tips.
Here are 10 podcasts that may be helpful:
- A BIG Baby With Erb’s Palsy, a Small Practice, and a Lesson in Apologies: In this episode of the Tell Me More: Better Conversations in Healthcare podcast, a mother talks about how her son was born with Erb’s palsy, and what she did to treat Nathan’s arm and avoid nerve graft surgery.
- Having a Moment With Moni: Find words of strength, humorous stories, and painfully real accounts of caring for an adult child with CP in this mother’s podcast.
- Healing Your Birth Story: This episode of the Birthful podcast discusses preventing and healing birth trauma. It’s a great listen for parents who feel a sense of guilt surrounding their children’s condition.
- I’m Not Ok, But I Will Be: The mother of a child with quadriparesis cerebral palsy details her life caring for her child and offers support and encouragement to other CP caregivers.
- Literacy Development in Children With Cerebral Palsy: In this podcast by the Cerebral Palsy Alliance, speech pathologist Alana Bain discusses what parents can do to encourage their child’s literacy development.
- Parenting Impossible – The Special Needs Survival Podcast: In this podcast, experts and parents discuss issues related to raising children with special needs.
- The Cerebral Palsy and Fitness Podcast: Podcast host David Figueroa shares his experiences of living with CP and interviews guests who have overcome challenges associated with CP.
- The Happy Healthy Caregiver: This podcast helps caregivers learn meaningful ways to support their own self-care while caring for others.
- Two Sides of the Spectrum: Some children with birth injuries have autism spectrum disorder (ASD). This twice-monthly podcast explores autism research, amplifies autistic voices, and changes the way we think about autism in professional therapy and life.
- What to Do When the Poo Just Doesn’t Move: Many children with CP suffer from constipation. This episode of the Kids Health Info podcast from the Royal Children’s Hospital Melbourne discusses constipation in kids, how to identify it, and how you can treat it at home.
If you want something more interactive and hands-on to help with caregiver support, there are many apps that may be beneficial.
For example, there are apps that can help you create a daily caretaking schedule or help your child learn sign language, speech-language skills, or appropriate social behavior.
An app called Care.ly allows caregivers of a loved one to connect with one another to schedule caregiving time and appointments and find local resources. The app is free for families.
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.
7 Ways to Get Help With Caregiver Duties
Getting help with caregiver duties can be challenging. Many caregivers feel like they are solely responsible for their child’s well-being.
Remember that you are not alone and that support for caregivers is available.
Here are some tips for getting help.
1. Ask for Family Support
First, talk to your family members to see if they can help you with caregiver duties. Be honest about your fatigue and stress level. Try to create a plan that splits caregiving duties among several people.
2. Find Home Care Services
If you have minimal family support, consider finding quality home care services. The best home care services can lessen burnout by helping you with draining tasks, like bathing and feeding your child, cooking, and grocery shopping.
3. Consider Respite Care
Respite care provides short-term relief for caregivers. It can be arranged for a day or for several weeks or months. Respite care can be provided in a health care facility or at home.
4. Keep Up With Self-Care
You also need to take care of yourself. Eat a well-balanced diet, listen to relaxing music, and remind yourself that you are an individual with your own needs and that caregiving doesn’t define you. Allow yourself to find happiness and take frequent breaks, if possible.
5. Seek Financial Assistance
Caregiving can be costly, especially if medical insurance doesn’t cover certain expenses. Research grants, government programs, and other types of financial aid such as legal compensation.
6. Join a Caregiver Support Group
Caregiving can be isolating, especially if you don’t know any other parents raising children with disabilities.
You can alleviate your loneliness and gain different caregiving perspectives by joining a caregivers support group that meets in person or online. Caregiver support groups are a safe place to share your feelings, vent, and recharge.
7. Get Help With Your Mental Health
Finally, you should look for a therapist or counselor if you feel hopeless or overwhelmed. This can help you regain emotional balance and give you a better understanding of your feelings.
Caring for a child with a disability can be exhausting and stressful but also rewarding. By joining caregiver support groups and accessing some of the other resources listed in this caregivers support guide, you will be better able to manage your stress and focus more on the positive aspects of raising a child with special abilities.
Caregiver Support Guide FAQs
What are three signs of caregiver stress?
There are many different signs that indicate that a caregiver is stressed.
According to Mayo Clinic, 3 signs of caregiver stress are:
- Being constantly stressed or worried
- Feeling sad
- Gaining or losing weight
What kind of support is most necessary for the caregiver?
A variety of support resources can help caregivers as they navigate their daily responsibilities.
Family and friends can pick up groceries or sit with the person being cared for to give the caregiver a break. Caregiver support groups provide community with others facing similar challenges. Therapists can help caregivers keep up their mental health.
How do I find caregiver support groups near me?
You can find caregiver support groups in your area by searching on the internet or through social media. Your child’s doctor or special education teacher may also know of groups in the area.
You can also look for caregiver support groups that meet online. Caregivers sometimes prefer online groups because they are more convenient and more options may be available.