Raising a child with cerebral palsy creates fresh challenges for the whole family. Embracing a life with cerebral palsy requires planning, organization, perspective, adaptation and lots of inspiration.
MyChild™ has devised the MyChild™ CP Care Plan At-A-Glance in an effort to provide a structure, or organizational chart for parents seeking guidance as they look to embrace a life with cerebral palsy.
Through many online and phone inquiries, we come to realize that although there are many agencies, organizations, businesses and sole-practitioners who offer assistance, the big picture perspective is often missing.
A doctor, therapist, financial planner, lawyer, school teacher and insurance agent often have advice, based on their expertise, but little is offered as a game plan on “Where do I start? What’s available to my child? And, am I on the right track?”
MyChild™ offers the MyChild™ CP Care Plan as a way of organizing efforts, gaining perspective and embracing a future with cerebral palsy.
It would be overwhelming to sit, from point A to point Z and accomplish all the items on the list. Instead, the MyChild™ CP Care Plan is designed as a guide or a reference to organize the journey, over time.
The MyChild™ website is a place to visit often to gain perspective, find insight, and more efficiently organize plans for your child and for your family. Feel free to refer MyChild™ to others if you feel they may in some way benefit by the information, resources, expert referrals, and unlimited inspiration we offer.
How to Use the MyChild™ CP Care Plan
The MyChild™ CP Care Plan acknowledges eight essential components to your child’s care, which will evolve as the child grows and develops. There are items planned at home, at the doctor’s office, at school, through governmental assistance, community support, and with the help of friends and professional experts that will shape a child’s future.
Inherent in each of these initiatives are opportunities available to help a family meet their child’s needs. Not all of these are well-known, or easily found in one source, until now. Nor does every child require assistance in every aspect detailed in the plan.
As you work with service providers in each of these areas you will be forming goals for your child, and plans to meet those goals. Long-term goals for optimizing health and life span include:
- Optimize Mobility
- Manage Primary Conditions
- Control Pain
- Prevent and Manage Complications, Associative Conditions and Co-Mitigating Factors
- Maximize Independence
- Enhance Social and Peer Interactions
- Foster Self-Care
- Maximize Communication
- Maximize Learning Potential
- Enhance Quality-of-Life
Medical practitioners, service professionals, government agents, community supports and family will undoubtedly add specific goals and plans to record in the child’s plan, as well, for treatment plans, caretaking initiatives, rehabilitation, and benefit programs.
The topics are outlined below, and detailed under “Popular CP Topics.” Or, if you prefer, click on the subject of interest below to jump to the page containing general information on that topic.
For specific opportunities that may be available to meet a child’s specific and unique needs, call today! MyChild™ has a vast database of resources to help those touched by cerebral palsy.
Need more information on managing your child’s life expectancy outcome ?
Request MyChild™ Kit No. 421
The Life Expectancy Guide
Once care plan goals are created, they can be categorized in the following ways. These categories were chosen as they pertain to the specific needs of medical treatment, care at home, government assistance, community assistance, education, or various services which may be required to manage cerebral palsy through the individual’s entire lifespan.
Care at Home
- Care at home
- Home health care services
- Caregiver, daycare and respite
- Personal assistance and service dogs
- Meal plans
- Mobility and rehabilitation plan
- Recreation and play
- Socialization plan
- Home modifications
- Vehicle modifications
- Medication and drug therapy
- Assistive technology – global perspective
- Assistive technology – national perspective
- Complementary and alternative medicine
- Children’s Health Insurance Plan (CHIP)
- Energy Assistance (weatherization program or low income energy assistance program)
- Supplemental Nutrition Assistance Program (SNAP)
- Supplemental Security Income (SSI)
- Temporary Assistance for Needy Families (TANF)
- Women, Infant and Children Supplemental Nutrition Program (WIC)
- Early Head Start
- Head Start
- Child Care Aware
- Individualized Health Care Plan (IHCP)
- 504 Plan
- Individualized Family Service Plan (IFSP) – 0 to 2 years
- Individualized Education Program (IEP) – 3 to 21 years
- Transition into Adulthood Plan – 16 years
Community Support and Funding Service
- Government organizations – national
- Government organizations – state and local
- Non-government organizations (NGOs)
- Community-based organizations (CBOs)
- Faith-based organizations (FBOs)
- Cerebral palsy and disability organizations
- MyChild™ services
- Legal services
- Health insurance
- Estate planning, wills and trusts
- Financial planning and tax preparation
Transitioning Into Adulthood
- Workforce development
- Independent living
- Self-care and aging
- Family planning
Maturing with Cerebral Palsy
- Aging with cerebral palsy
- Declaring your preferences
- Emergency preparedness