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Help for Families and Children Affected by HIE.

Community Resources for HIE

In our last section, we discussed the Conditions Related to HIE. In this section and in the following section, we have collected some of the best government, national, local, online, and legal resources for children and families affected by HIE and Cerebral Palsy. 

This information has been compiled from government sources, medical sources, and from consulting with experts on HIE and Cerebral Palsy. 

Continue reading to learn about HIE support resources. 

Overview of Resources for HIE

There are many great community resources both online and offline for children and families who are affected by HIE or Cerebral Palsy. In this guide, we’ll cover the government resources, non-profits, and the official and unofficial support communities you can lean on for support following an HIE diagnosis. 

In the following sections, we’ve included links and brief descriptions of some of the many great community resources that you can get involved with today:

Government Resources

The Centers for Disease Control and Prevention (the CDC) maintains a list of great resources for children and families affected by Cerebral Palsy. 

The Individuals with Disabilities Education Act (IDEA) is an extension of the U.S. Department of Education. The IDEA website has great information on how to qualify and obtain funds and support for children with disabilities, including CP. 

Medicaid is a government program that provides health insurance coverage for low-income families and is one of the largest health care programs in America. 

The Children’s Health Insurance Program (CHIP) provides a “low-cost health coverage” option for families that earn too much money to qualify for medicaid. Because of the costs associated with CP, many families who are above the poverty line still struggle with bearing the burden. CHIP is a program meant to help address that problem. 

Supplemental Security Income or SSI is a form of financial aid available to families with people with disabilities.

Temporary Assistance for Needy Families (TANF) offers funds for childcare assistance. This program is designed to help needy families reach self-sufficiency through block grants and state programs. 

Social Security Disability Insurance is another program that helps people with disabilities who are insured (which can be a help with long term costs).

OAS, CMSS, Clearinghouse on Disability Information the Clearinghouse provides information to people with disabilities, or anyone requesting information, by doing research and providing documents in response to inquiries. Information provided includes areas of federal funding for disability-related programs. Clearinghouse staff is trained to refer requests to other sources of disability-related information, if necessary.

Developmental Disabilities Resource Center‘s mission is to create opportunities for people with intellectual and developmental disabilities and their families to participate fully in the community.

National Council on Disability plays a leading role in analyzing the needs of people with disabilities, crafting policy solutions, and advising the President and Congress.

Office of Special Education and Rehabilitative Services understands the many challenges still facing individuals with disabilities and their families. Therefore, OSERS is committed to improving results and outcomes for people with disabilities of all ages. OSERS supports programs that serve millions of children, youth and adults with disabilities.

ECTA Center (formerly NECTAC): Part C provides resources for a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years, and their families.

National Support Organizations

The Cerebral Palsy Foundation is a national organization that spreads awareness and educates on CP. Their network includes hospitals, technologists, innovators, and a strong base of support. 

March of Dimes is a non-profit organization dedicated to helping improve the health of mothers and babies. This group lobbies for and supports families who suffer from many varieties of health setbacks, including CP. 

Reaching for the Stars has an active Facebook group with over 10,000 members. Their objective is to encourage the advancement of cures and treatments for children with CP. 

CPNow Foundation: Advanced cerebral palsy research and providing parental education materials.

CP Daily Living: A site devoted to living with cerebral palsy.

United Cerebral Palsy: While UCP retains a name relating to cerebral palsy, they now provide services to individuals with a much broader array of diagnoses.

Wings of an Angel (helps children with special needs receive therapies, services and equipment)

Funding Resources for Special Needs & Adaptive Equipment is a resources for special needs & adaptive equipment.

 22 Free Things, Services and Grants for Kids with Special Needs is a great blog post summarizing free services and grants for children with special needs.

The Preemie Parent Alliance represents the needs and best interests of preemie families in all facets of healthcare policy, care guidelines, advocacy, education and family support.

The Family Advocacy Network (FAN): Sponsored by the National Perinatal Association, this group seeks to empower parents and families and encourage advocacy.

Local Support Organizations

The Arc is a network of local chapters that help support families with intellectual and developmental impairments. 

Parent to Parent USA partners experienced people with inexperienced parents of children with disabilities so help develop a mentoring system of support. 

ChildFind (a state-by-state program) helps evaluate children who may need Early Intervention services

United Cerebral Palsy (UCP) helps parents and families on a local level lobbying for equal access and accommodations in schools and local government. 

Online Support Groups

Special Needs Moms for Moms is a fantastic online resource for mothers (and fathers!) to find other families facing similar challenges. 

Mommies of Miracles is one of the largest online networks of mothers with children that have developmental impairments. Their network has many helpful resources as well as grief support and plenty of opportunities to get involved in a community. 

Legal Support Resources

No parent or family member is ever fully prepared for receiving the bad news about a birth injury. The positive emotions of joy and excitement to welcome a little one into the world can be overwhelmed by feelings of sadness, shock, anger, and confusion. 

These emotions are normal, and part of coping with a birth injury. Often, parents also have questions–how did this happen, why did this happen, was it preventable? 

If you have questions, or if you suspect that your child’s birth injury may have been caused by poor medical care, you should consider speaking with a birth injury attorney. A birth injury attorney focuses on injuries that occur at or near the time of birth, like Cerebral Palsy, and can help you figure out what your next steps are to adapt and overcome the challenges of a birth injury. 

An experienced birth injury attorney can help investigate and guide families through the process of finding answers. If your child’s HIE or Cerebral Palsy was caused by a preventable medical mistake, then you may be entitled to compensation. This compensation can open up options for early intervention and treatment that may improve your child’s development. 

About Brown Trial Firm

Getting help for a child with HIE or Cerebral Palsy can make a big difference. Because early intervention is often key to helping improve a child’s wellbeing, it’s important to act swiftly.

At the Brown Trial Firm, our birth injury attorneys can help you investigate your case, find answers to your questions, and determine whether you are entitled to compensation. 

We offer case reviews at no cost or obligation. Many birth injuries that cause cerebral palsy could have been prevented. Don’t wait, get help today. Call us toll free at +1 (866) 223-7465 or email us a [email protected].

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