A child with a birth injury often faces difficulties and hurdles throughout their life. This struggle is mirrored in the lives of their caregivers, who must learn new techniques to raise children with unique health issues. In these situations, caregivers can turn to a variety of resources for help administering the kinds of specialized care required for their child. These resources can include regular caregiver support group meetings for a sense of community and further education, scholarship opportunities for children with special needs, financial assistance to acquire costly medications or surgical procedures, and more.
Learning about available resources can be a crucial boon to the caregiver of a child living with a birth injury. The specialized care that birth injuries necessitate often means that a caregiver must be by the child’s side around the clock. This can put families in a bind as they lose potential income all while the expenses of the child’s healthcare increase. Additionally, the stress of providing constant care can bring its own negative psychological impacts on the caregiver—not to mention the stress of not knowing how to administer treatments or cope with the strain of caring for a child with a birth injury.
The resources listed below can help caregivers in a wide variety of ways. By using these resources, everyone involved in the giving of care is benefitted—especially the child. Not only can a caregiver learn better ways to provide care and improve the child’s lived experience, but some of these resources give children with birth injuries increased opportunities for learning, growing, and thriving throughout their lives.
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What Financial Resources Are Available?
From physical therapy sessions to stints in a hyperbaric chamber and even extensive surgeries, children with birth defects often require expensive treatment. Given that birth injuries are always a shock, most families are ill-equipped to handle the financial strain that comes with providing the best possible care for their children. But that should not mean that their child has to go without these life-saving and life-improving treatments. Here are a few options that can help caregivers acquire much-needed monetary assistance.
The Special Supplemental Nutrition Program for Women, Infants, and Children, better known by its acronym, WIC. Designed to provide food, healthcare, and related information for low-income mothers, WIC is estimated by the federal government to serve half of the infants born in the United States. A caregiver can apply for this program by clicking the link above.
- WIC is available in all 50 states, Indian Tribal Organizations, and U.S. territories.
- Women and children are eligible for WIC until the child turns six years old.
Medicare and Medicaid
Often confused in common parlance, Medicare and Medicaid are separate programs that provide financial assistance to qualifying persons. However, it is possible to have dual eligibility and receive both forms of assistance if the child qualifies. Medicare provides healthcare coverage for citizens over the age of 60 as well as people under the age of 60 who have disabilities, so a child with a birth injury should qualify for this assistance. Medicaid is geared toward providing healthcare coverage to households with low income. Since many caregivers must devote their time to their child’s treatment rather than a career, it is possible that they may qualify for this assistance as well.
- Dual coverage usually covers almost all healthcare costs.
- “Spend-down” is available in some states, which means you can subtract your medical costs from your income in order to qualify for Medicaid.
SNAP is the Supplemental Nutrition Assistance Program that is administered by the federal government for families in need. Like WIC, this program is available to low-income recipients. Unlike WIC, it applies to households rather than just women, infants, and children up to the age of five. Also, SNAP has special rules for the qualification of disabled people. To qualify as disabled, an applicant must meet one of the following criteria, among others.
- Receive federal SSI benefits
- Receive state SSI benefits
- Is the spouse or child of a permanently disabled veteran
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What Special Education Options Are Available?
There are numerous resources for providing children with birth injuries special education opportunities. At lower levels, such as elementary or middle school, these programs can help the child learn at their own pace or with special accommodations for their specific needs. At the higher education level, scholarships can help ease the financial burden on families already struggling with medical expenses.
A quick Google search will reveal many different kinds of scholarships available for children with birth injuries. For example, United Cerebral Palsy is a national organization that awards scholarships to students both nationally and via its local branches. Here at the Birth Injury Lawyers Group, we also provide a scholarship to a college student with cerebral palsy. Each scholarship will have its own list of eligibility criteria, such as a certain GPA status, written essays, and other factors.
has given rise to “504 plans” in public schools. Essentially, 504 plans ensure that students with disabilities are not discriminated against solely because of their disability. They make it easier for children with birth injuries to learn with their peers in the classroom by affording them special privileges according to their needs. Examples of these kinds of accommodations include:
- Longer test times
- Frequent classroom breaks
- Speech therapy or assistance
While there is no clear blueprint for a 504 plan, the goal is to get rid of obstacles to the child’s learning so that they are placed on equal footing with the rest of the class.
Individualized Education Plans
Individualized Education Plans (or IEPs) are different from 504 plans. While a 504 plan gives students accommodations for their disability, IEPs provide specific, individual instruction to the child based on their unique needs. An IEP is an outline of the services that a child will receive, one-on-one, to help them overcome the hurdles they face. A particular child’s IEP may include physical therapy sessions, speech-language therapy, occupational therapy, or other forms of assistance. IEPs can help children work on specific tasks like gripping a pencil, navigating staircases, etc.
In some cases, there may be a school that is designed specifically to cater to individuals with a certain birth injury. One of the more famous of these organizations is the HMS School for Children with Cerebral Palsy. While these institutions can be expensive due to the high level of care they provide, many of them offer scholarships to help families in need. Since these schools are far less numerous than public schools, many families may decide on less-expensive public options or even in-home education opportunities.
Are There Specialized Facilities That Can Help?
Several types of organizations and facilities exist to provide assistance to caregivers of children with birth injuries. These facilities often have locations across the country that focus not only on caregiving services but on emotional support and community. Children and caregivers alike can greatly benefit from immersion in a community of caring people with similar difficulties who understand their struggles and can relate.
By performing a search online, caregivers can find local branches of organizations that provide care to the community near them. Some of these associations are even exclusively online, such as the Disability Network or the Cerebral Palsy Family Network. By using these resources, caregivers can access healthcare information, support groups, activities, financial assistance, and more. Here are a couple of other options:
Local UCP Chapters
UCP stands for United Cerebral Palsy, which was discussed above regarding its awarding of scholarships to children with birth injuries. There are localized chapters of UCP in many states, as well as Canada, and caregivers can find the one closest to them here.
UCP chapters provide families in need with a wide variety of resources, including:
- Housing assistance
- Specialized technology for children with CP
- Research information
- Ongoing caregiving education
Specialized Child Care
Birth injuries can cause learning disabilities as well as physical impairments, necessitating the formation of specialized techniques to help children learn, grow, and move to their full potential. Specialized care options are available, such as the Head Start program for low-income and disabled students. A caregiver should discuss available programs with knowledgeable birth injury attorneys, school advisors, members of a local community support group, or representatives of local birth injury associations to learn more about how they can take advantage of these specialized care programs.
Birth Injury Clinics/Cerebral Palsy Centers
Birth Injury Clinics or Cerebral Palsy Centers are specialized healthcare organizations that treat patients with birth injuries and provide educational information to caregivers. Their assistance is incalculable. These organizations employ healthcare providers with high levels of experience handling birth injury cases, and they are dedicated solely to the diagnosis, treatment, and improvement of these issues. Below are just a few examples of these lauded clinics.
- The Cerebral Palsy and Spasticity Center at Boston Children’s Hospital
- Stanford Children’s Health
- The Brachial Plexus Clinic at Seattle Children’s Hospital
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Are There Birth Injury Support Groups Available?
Getting involved with a support group for other caregivers of children with birth injuries is a great way to connect with a community of people who understand life as a caregiver. Support groups provide a platform for interpersonal relationships as well as educational information, an outlet for discussing the stress and grief that can come with long-term caregiving, a network of people who may have resources for caregivers in need, and much more. Not only does this lead to better care for the child with the birth injury and a better support system for the caregiver, but having a wider community of children with similar struggles can help your child make friends and reduce feelings of isolation.
Support groups come in a variety of sizes and formats, so caregivers can pick a style that suits their specific needs and the needs of their child. For example, a child’s birth injury may mean that they have a difficult time with mobility, so a caregiver may opt for online support networks rather than in-person groups.
Family Support Groups
Support groups aimed at families can be beneficial in many ways. Usually, they seek to address the needs of everyone in the family of the child who has a birth injury. For parents and caregivers, access to a community of other caregivers in similar situations can help stave off the depression that comes with feeling like they are all alone in their struggle to provide care. Family support groups also provide:
- Peers among children with birth injuries
- Information on medical malpractice claims
- Caregiving instruction
Online Support Groups
Support groups like the aforementioned Disability Network are available online for caregivers who either have no local in-person group to attend or find the trip to an in-person group too arduous. In the modern era, these kinds of groups are popping up across the Internet. Some are specific to the birth injury itself, such as online cerebral palsy support groups, while others are meant to apply to people in a specific role. For example, some online support groups are solely for people who have birth injuries, while others are for family members of people with birth injuries.
In-Person Support Groups
Meeting in-person may be a better option for some caregivers and children with birth injuries. These kinds of gatherings offer a chance to get out of the house and travel a bit, which can benefit people who feel too “cooped up” in their homes. Plus, in-person groups provide a chance to interact with other caregivers and children with birth injuries via fun activities, such as playing board games or engaging in a trivia event.
How Support Groups Can Help
Above, we have listed a few of the many ways that support groups can benefit families, caregivers, and children with birth injuries. These include the following.
- Sharing information about financial resources
- Updating each other on new research or therapies
- Trading legal connections for malpractice lawsuits
- Providing a sense of community and bonding
- Making friend connections
- Relating to others’ stories
How to Find a Support Group
If you are a caregiver or family member of a child with a birth injury, you do not have to struggle in isolation. There are many support groups and resources available to ease your burden and provide you with quality assistance to give the best possible care. A good way to find a support group near you is to use the database of the Centers for Disease Control and Prevention, which catalogs a large number of support groups for birth injuries as well as birth defects. Another good resource is the Birth Injury Help Center, which provides caregivers with specialized daycare and education services.
Birth Injury Caregiver News
Parents Of Children With CP May Struggle With Caretaker Burdens
One of the challenges of raising a child with cerebral palsy or another birth injury is that it thrusts parents into more of a caretaker role than they already are. The burdens of medical caretaking can take their toll on the wellbeing of parents, which in turn can reduce their ability to care for their children’s needs.
A study recently published bears this out, according to Cerebral Palsy News Today. Mothers of children with spastic CP were administered several questionnaires to measure how well they were able to provide care. They found that depression, fatigue, and the burdens of care were all high in the population.
Higher levels of education and employment status did improve the mother’s overall quality of life and did help them with coping strategies to deal with their challenges.
“In this study, the significant predictive power of caregivers’ burden, depression, and fatigue was confirmed, implying that interventions should lay emphasis on the empowerment of family caregivers by providing proper training, supporting them, and facilitating access to necessary resources in order for them to handle the burden of care better,” the researchers said.
If you need help, there are groups of caretakers who help support each other by sharing their struggles. Seek these out in your community. Compensation helps, but you need to take care of yourself too.