Awareness - Parents

For the parents of children with Cerebral Palsy, half of the battle of managing Cerebral Palsy is becoming aware of the programs, organizations and contacts that are available to provide families with vital supports. But awareness also means being aware of a child’s physical, emotional, social, educational and familial needs and goals.

Awareness leads to opportunity

From the moment a parent learns that his or her child may have a disability, they are on a mission to learn how their child’s health condition will affect the child – and the family. Early on, parents discover that when it comes to awareness of resources available to children and their families, researching options and completing applications is a full-time job in and of itself.

An endless array of information, from those made available by federal, state and local governments to those available at school, community groups, and nonprofit organizations is made available through several sources both online and through in-person appointments. This onslaught of data, figures and facts can be overwhelming in the best of circumstances; in the worst of scenarios, the information can be difficult to understand, out-of-reach, or hard to find.

Awareness is the most valuable resource in terms of a parent’s ability to create a safe, secure environment for his or her child. Many organizations offer resources that can help a parent tap into everything from low-cost or no-cost adaptive equipment to opportunities for home and automobile modification; all of which are likely to open a new world to a family touched by Cerebral Palsy. But if a parent doesn’t know what’s available for their child, how can he or she possibly use these tools?

Knowledge is power

The Center for Disease Control and Prevention estimates that about 50 million Americans live with one or more disabilities. The National Institutes of Health estimate that of those people, about 800,000 children and adults are living with one or more symptoms of Cerebral Palsy.

Many of those citizens, unfortunately, will cope with their disability without taking advantage of resources that will make their lives easier, and more meaningful. This, for these individuals, is a tragedy that is entirely preventable.

A parent is most likely a child’s strongest advocate when it comes to his or her child’s medical care, education, and inclusion in activities. In a best-case scenario for a child, a parent will bring the same vigor to identifying and harnessing opportunities offered from government and nonprofit resources.

Being aware also means understanding how provisions and laws apply to children with disabilities, and their families. For example, when a child begins school, parents will be better able to understand how to dialog with teachers about their child’s education if they know what to expect from the process. If parents understand what is included in a child’s Individual Education Plan process – a required outline for special education services specific to their child’s needs – they will be able to make sure that the plan is sufficient and appropriate for their child.

Federal and state resources

Perhaps the most beneficial first step a parent can make when they are ready to begin looking for resources is the federal government. Most of these programs a parent can apply for based on either the nature of a child’s disability, their income level, or the family’s need. The challenge, though, is in knowing how the departments are structured, what programs they offer, whether the family is eligible to receive assistance, and where to apply.

Luckily, much of the information a parent will need to look at is available online, but not all in one location. Information about services available through the U.S. Department of Health and Human Services’ office, for example, is available at the HHS.gov website. There are many divisions of HHS that offer programs for those with Cerebral Palsy. These include the following departments:

• Centers for Medicare and Medicaid Services (CMS)
• Administration for Children and Families (ACF)
• Centers for Disease Control and Prevention (CDC)
• Department of Developmental Disabilities (DD)
• National Institutes of Health
• Office for Civil Rights (OCR)
• Office on Disability (OD)

Housing, rental and home modification assistance are provided under the U.S. Department of Housing and Urban Development; while the energy and weatherization programs are provided through the U.S. Department of Energy. The U.S. Department of Labor provides information about equal opportunity and workforce development to assist individuals with employment rights and gainful employment opportunities; while the U.S. Department of Justice enforces protections and advocacy against abuse and violence to those with a disability.

During childhood years, the U.S. Department of Education is charged with providing special education, rehabilitation, and vocational assistance to those with a disability.

In most cases, the parent can ascertain whether they are eligible for such assistance and apply online with the expectation of meeting with a social worker, human services caseworker, or education administrator sometime thereafter.

The Federal Government regulates and allocates funds; while state governments are largely responsible for qualifying individuals, administering services and dispersing funds.

States have some leeway and, therefore, do differ on the criteria they use when dispersing funds for national programs. States also develop additional programs of assistance they deem necessary for their citizens. To complicate matters, programs may vary in naming conventions from state to state.

Some departments administer a program while another department implements it. For example, the Supplemental Nutrition Assistance Program (SNAP), formerly known as the food stamp program, is administered by the U.S. Department of Agriculture, yet the monies are applied for and dispersed through the local Department of Health and Human Service offices.

For assistance with government resources in your state, MyChildTM has developed Kit No. 101 – Getting Started with Government Resources. Call (800) 692-4453 to request Kit No. 101. This kit is free.

Nonprofit and community programs

Parents will find that while government can be an immense source of information and support for their child, it is fundamentally unable to fill in all of the gaps. That’s where nonprofit organizations, community-based organizations and local groups step in.

Very large nonprofit groups like United Cerebral Palsy have spent several years gathering data and advocating for individuals with Cerebral Palsy. The Cerebral Palsy International Research Foundation is equally committed to funding and spearheading research that has led to new ways to treat the condition, and improved medical care for adults and children alike.

But small local groups can have an enormous impact on a child with Cerebral Palsy because in many cases, they have hands-on activities at community centers that aim to educate, include and inform. Small nonprofits and community organizations have the advantage of being nimble in that they can create opportunities for support, recreation and education.

The number of local groups that have programs and resources for individuals with Cerebral Palsy – or for children with disability in general – is dependent on where a family lives. Large metropolitan areas are likely to have more organizations to contact; where rural areas are less likely to have abundance.

Every little bit counts

Managing a child’s Cerebral Palsy can put a strain on relationships and household finances. That’s why every little bit counts. It’s necessary for parents, as strange as it may sound, to look beyond limitations of their immediate circumstances towards the wealth of opportunity that abounds. Being aware of resources and how they can potentially help – or not help – will assist a parent trying to manage their child’s condition, mitigate a child’s challenges, and assist a child to learn, grow and thrive.

Technology, namely computers and the internet, has made it possible for parents of children with special needs to find support groups and information within their community. The advent of social media, namely Facebook and Twitter, makes it possible to connect directly with others and be in the know.

The process of becoming fully aware of opportunities for assistance is likely to be time-consuming and stressful, but in the long run, missing out on resources that could make the difference between a child receiving medical aid, monies, assistance or opportunities for inclusion in society is likely to weigh on parents.

Awareness is about more than knowing a child has a disability. It’s about finding available resources, and persistently pursuing opportunities for the child’s future growth and development.