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Creating a life care plan is one of the most important things parents can do for a child with cerebral palsy. An essential part of a life care plan is a care team. A care team for cerebral palsy includes a wide range of experts, caregivers, and supporters.
Why Does My Child with Cerebral Palsy Need a Life Care Plan?
Finding out your child has been born with a disability is a big hurdle to overcome. It may take time to grasp what that means for the future.
As you are coming to terms with your child’s disability, it’s important to plan for the future. A life care plan is a detailed guide that outlines everything your child will need and what it will cost.
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Get Help NowThe first reason that this is so important is the most obvious: having a plan means providing the best care for your child. The second reason may not seem important initially, but it will be soon.
You need a life plan to prove to a judge or jury that your child needs lifelong care and that the person or healthcare facility responsible for your child’s disability needs to admit responsibility and provide compensation.
A complete care plan should involve a team of people who can provide valuable input. This includes medical professionals, education specialists, legal and financial advisors, and more.
The Legal Care Plan Team
Since there are legal and financial aspects to your child’s cerebral palsy life care plan, your trusted lawyer or legal team should be one of the first members of the care team. Your birth injury lawyer will understand how to put together a care plan to maximize your ability to prove that your child needs and deserves compensation.
Your lawyer should have the experience to make the case with your child’s best interests in mind.
In addition to the birth injury lawyers who advocate for you and your child, you may need other legal specialists on the team. These may include lawyers specializing in civil rights if your child is ever targeted and those specializing in education so you can ensure your child gets what they need at school.
You’ll also need an expert who can help you with trusts, estates, and wills to plan for your child’s future if anything happens to you.
The Medical Care Team
The legal team is crucial for planning your child’s future care and ensuring you can pay for it. Your medical care team plans and delivers vital healthcare services.
- You will need one primary medical professional, such as your family doctor or pediatrician, who will lead the medical team and help guide you to the other specialists you need on the side.
- In addition to your primary doctor, your child may need an orthopedist or orthopedic surgeon, physical therapists, rehabilitation medicine specialists, and chiropractors to treat your child’s physical disabilities.
- Neurologists can diagnose and care for neurological issues underlying your child’s impairments.
- In addition to basic medical needs, your child may also need care and treatment from numerous specialists such as audiologists, urologists, nutritionists, behavioral specialists, and more.
The Home Care Team
Depending on the degree of disability in your child with cerebral palsy, you may need multiple caregivers in your home. Visits from nurses may be necessary initially to help you learn to care for your child’s medical needs.
Professional home caregivers may be required, depending on whether or not you need to go to work or if your child needs around-the-clock care. If your child’s everyday needs are not medical, you may be able to have a friend or family member take on this caregiver role.
Other professionals who may come to your home and work with your child include physical and occupational therapists, speech therapists, recreational therapists, home modification experts, adaptive equipment experts and installers, nutritionists, behavioral therapists, psychologists, and even service animals and their trainers.
Education and Community Teams
It’s never too early to start thinking about education and learning for your disabled child. Many children with cerebral palsy have average intelligence, but many struggle with cognitive impairments and learning disabilities.[1]
Being able to socialize and develop along the same parameters as their peers could also be an issue. Having an education team to evaluate and intervene can help put your child on the right path.
Your education team may include local school district administrators and special education teachers. It could also include a school social worker, psychologists, paraprofessionals, speech and language pathologists, audiologists, vision specialists, and physical therapists.
Your community team may also overlap with your education team. It could include any local organizations that help families of children with disabilities, your faith-based community, school teams, and extracurricular activity leaders.
Government Services
You may also want to enlist those agencies and individuals in the government that provide services and support to children and families with disabilities:[2]
- Medicare and Medicaid
- Department of Developmental Disabilities
- Office for Civil Rights
- Administration for Children and Families
- National Institute of Neurological Disorders and Stroke
Through organizations like these, you can get developmental screenings, home-based services, federal health insurance, children’s health insurance, resources for caregivers and health care providers, community-based services, long-term care services, housing assistance, food assistance, job training and services, and other resources.
Non-Medical Professionals and Providers
You may not think about these aspects of your child’s care, but your legal team will help you develop a care plan that covers all the bases. That includes working with accountants, estate planners, financial planners, real estate professionals, life insurance agents, and others to plan for your child’s future.
You must also work with service and product providers to make your child’s life productive and comfortable.
These organizations will provide you with adaptive and assistive equipment, prosthetics, recreation, rehabilitation, travel and transportation, hygiene products, and any other products and services needed for your child to be independent and self-sufficient to the fullest extent.[3]
To give your child the best possible future, you must plan to ensure they are as independent, fulfilled, and comfortable as possible.
You will need to plan more than for another child without disabilities, but by doing so, you can give them the best possible life. Your care team will be a big part of this, so plan to include everyone who can help your child be their best self.
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Get Help NowReferences
- Stadskleiv, K. (2020, January 9). Cognitive Functioning in Children with Cerebral Palsy. Dev. Med. Child Neurol(3), 283-9.. 62
Retrieved from: https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.14463 - USA.gov. (n.d.). Disability Services.
Retrieved from: https://www.usa.gov/disability-services - United Cerebral Palsy. (2018). Our Resource Guide.
Retrieved from: https://ucp.org/resource-guide/