A life care plan is one of the best things parents can do for a child with cerebral palsy. As soon as you find out that your child will be living with this condition and the associated disabilities, it is time to start planning. A plan means covering all the bases and ensuring that your child will get the most out of life, every step of the way. A crucial part of that life care plan is the care team.
A care team for cerebral palsy includes a wide range of experts, caregivers, and supporters who will provide for everything your child needs that you cannot give him or her. Your cerebral palsy care team may include doctors, specialists, nurses, therapists, educators, legal advisers, community members, friends, family, and others. Put your team together now so you are ready to give your child the best chance at living a meaningful, productive, and enjoyable life.
Building a Life Care Plan for Cerebral Palsy
Finding out your child has been born with a disability is a big hurdle to overcome. It may take you some time to grasp what that means for the future. It is important, though, that as you are coming to terms with your child’s disability, that you start planning for that future. A life care plan is a detailed guide that outlines everything your child will need and what it will cost.
The 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 provide proof to a judge or jury that your child needs lifelong care and that the person or health care facility responsible for your child’s disability needs to admit responsibility and provide compensation.
The Legal Care Plan Team
Because there is a legal and financial aspect 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 that will maximize your ability to prove that your child needs and deserves compensation. Your lawyer will have the experience needed to make the case with your child’s best interests in mind.
In addition to the birth injury lawyer who will be advocating for you and your child, you may need other legal specialists on the team. These may include lawyers that specialize in civil rights if your child is ever targeted, those that specialize in education so you can ensure your child gets what she needs at school, and a lawyer that can help you with trusts, estates, and wills so you can plan for your child’s future if anything happens to you. Also helpful may be labor and employment lawyers, insurance lawyers, real estate lawyers, and social security lawyers.
The Medical Care Team
The legal team is crucial for planning for your child’s future care and making sure that you can pay for it, but your medical care team is the team that will actually plan and give the care she needs. 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 team.
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 provide diagnoses and care for neurological issues that underlie your child’s disabilities.
In addition to these basic medical needs, your child may also need care and treatment from audiologists, urologists, nutritionists, developmental specialists, psychologists, orthodontists, speech and language pathologists, behavioral specialists, and many more professionals that specialize in the kind of care your child needs.
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 necessary, 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 that may come to your home and work with your child there 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 normal intelligence, but many struggle with cognitive impairments, learning disabilities, and simply being able to socialize and develop along the same parameters as their peers. Having an education team to evaluate and intervene can help put your child on the right path.
Your education team may include the local school district administrators and special education teachers, the school social worker and psychologists, paraprofessionals, speech and language pathologists, audiologists, vision specialists, physical therapists, and educational specialists who can develop and implement interventions for early learning.
Your community team may also overlap with your education team and may include any local organizations that help families of children with disabilities, your faith-based community, school teams and extracurricular activity leaders, and anyone else who can help your child be involved and active.
You may also want to enlist those agencies and individuals in the government that provide services and support to children and families with disabilities. Medicare and Medicaid, the Department of Developmental Disabilities, the Office for Civil Rights, the Administration for Children and Families, the national Institute of Neurological Disorders and Stroke, and more are available to provide resources and support for families like yours.
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 professionals like accountants, estate planners, financial planners, real estate professionals, life insurance agents, bankers, and others to plan for your child’s future.
To make your child’s life productive and comfortable, you will also need to work with service and product providers. These are the people and companies that 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.
To give your child the best possible future, to ensure that she is as independent, fulfilled, and as comfortable as possible, you need to plan. You will need to plan more than for another child without disabilities, but by doing so you can give her the best possible life. Your care team will be a big part of this, so plan for it to include everyone that can help your child be her best self.