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A plan of care is a road map that will improve a child’s physical, developmental and psychological development. The care plan’s scope involves the input of several professionals that work to assess a child’s abilities and limitations, and devise treatments and accommodations that help expand a child’s capabilities.
Many individuals come to the aid of a family touched by Cerebral Palsy. Since every child’s condition and circumstances are unique, their needs will be, as well. The types of services a family can afford or need – and the level of support they receive – depends upon many factors.
Access to health care facilities, health insurance, adequate shelter, financial stability, government assistance, community support, effective education plans, and funding can be extremely beneficial. The care plan outlines various aspects a parent may want to explore while managing their child’s journey with Cerebral Palsy.
Click on the links contained in the outline for more details.
MyChild™ has developed the MyChild™ Care Plan Process At-A-Glance to provide parents with an outline to organize their efforts to care for their child.
After receiving a Cerebral Palsy diagnosis, many parents have informed MyChild™ that they are confused as to who to see and how to care for their child. The MyChild™ Care Plan Process At-A-Glance provides an overview of the process from diagnosis to management of care.
This process is not meant to be all-inclusive. It is to present a guide which MyChild™ hopes will provide insight into the many aspects of care, whether at home, at the doctor’s office, during education evaluations, or simply for planning for the future.
Each section of the MyChild™ Care Plan Process At-A-Glance can be explained in detail by clicking on the section heading.
These components are outlined below.
Many individuals come to the assistance of a family touched by Cerebral Palsy. Since every child’s condition and circumstances are unique, their needs will be as well.
The types of services a family can afford and the level of support they receive depend upon many factors. Often the family dynamics play an important role.
Being aware of the support systems that are available is the first line of defense in obtaining assistance. Qualifying, applying and following program guidelines are additional steps often required.
Following, MyChild™ provides an overview of the types of services and the providers that are available, in hopes of creating awareness of providers which may assist parents in caring for their child.
The following is a list of some of the types of providers that may be of assistance. This is not intended to be a fully comprehensive list, but instead to provide a few of the types of providers the parents may deploy for assistance in managing their child’s condition during the child’s life span. Gaining knowledge of available resources is a powerful tool towards providing the care the family needs and the child deserves.
The service teams include:
- Care at Home Team
- Medical Care Team
- Government Services Team
- Education Team
- Community Support and Funding Team
- Legal Service Team
- Professional Service Team
- Product and Service Provider Team
To learn more about these teams, visit Care Team For Managing Cerebral Palsy.
Parents or legal guardians work closely with the child’s primary care physician to obtain a formal diagnosis. The diagnosis will attempt to discover the cause and form of Cerebral Palsy. During the diagnosis process, many screens and tests provide relevant information to confirm or rule-out a diagnosis of Cerebral Palsy. In addition, children may have associative conditions or co-mitigating factors that may also be diagnosed during this process.
For efficient retrieval, these should be stored in a child’s home health records. You will refer to these documents often for many different purposes.
In particular, the following documents are extremely useful:
- Radiological findings of brain injury or abnormality – PVL, IVH, HIE, Cerebral Dysgenesis
- Cause of brain damage or abnormality – prematurity, low birth weight, lack of oxygen, malformation, shaken baby, accident, medical malpractice, infection, prematurity, etc.
- Timing of brain damage – prenatal, perinatal, postnatal, acquired, congenital, or genetic predisposition
To learn more, visit Cause of Cerebral Palsy.
- Severity – mild, moderate, severe, and no CP
- Extent – plegia or paresis
- Location/anatomical distribution – mono, di, hemi, para, tri, tetra, quad, and penta
- Gross Motor Function Classification Level – Level I, Level II, Level III, and Level IV
To learn more, visit Form of Cerebral Palsy.
- Fill out The Cerebral Palsy Risk Factor Checklist, discuss with your child’s doctor, and maintain a copy in your child’s health records.
- Fill out The Cerebral Palsy Diagnosis Checklist as you receive diagnosis and test results, and maintain a copy in your child’s health records.
- Obtain medical records from your child’s various doctors for diagnosis, lab results, test results, specialist recommendations, and immunization records, and keep a copy in your child’s health records. (Note, these results are usually provided free at the time the doctor discloses the information to the parents, however asking for medical records after the fact may require a formal written request and a nominal cost for record retrieval.)
- File medical records obtained in your child’s health records for future reference. These documents help a parent to document their child’s care, but may also be retrieved when reviewing your child’s condition with other doctors, for tax preparation, for bill payments, creating trusts, financial planning, caregiving, government benefit applications, or education eligibility consideration.
To learn more, visit Record Keeping.
To learn more about the diagnosis process, visit Diagnosis of Cerebral Palsy.
Upon diagnosis, an orthopedic surgeon will likely define the extent, location and severity of the child’s motor impairment. The child’s primary care physician will document any associative conditions or co-mitigating factors. Some associative conditions and co-mitigating factors may develop over the child’s lifespan and can be added to this plan. A child with special needs is urged to begin early intervention.
During early intervention and school evaluations the child’s activities of daily living will be evaluated for services and adaptive device consideration. Family dynamics and socio-economic status will be assessed by school, government agencies or specialists to assist with services and possible funding and support. Educational plans will be made during the child’s school years in the Individualized Education Plan (IEP) process.
- Abnormal muscle tone
- Movement coordination and control difficulties
- Reflex irregularity
- Abnormal posture
- Abnormal balance
- Gross motor dysfunction
- Fine motor dysfunction
- Oral motor dysfunction (Feeding, swallowing, respiratory, speech and vocal)
To learn more visit Mobility.
- Developmental Delay
- Digestive Health
- Neurologic Health
- Nutrition Health
- Oral Health
- Orthopedic Health
- Respiratory Health
- Seizure Control
- Skin Health
To learn more about associative conditions and co-mitigating factors, visit Associative Conditions.
- Dressing and undressing
- Food preparation
- Personal hygiene
- Transferring (bed, chair, toiletry, etc)
- Access to health care
- Access to health insurance
- Socio-economic situation (financial, educational, parental status, language barriers)
- Caretaking capacity
- Support network
- Housing situation
- Transportation situation
- Extenuating circumstances
To learn more about care at home, visit Home-Based Assistance.
- Academic Performance
- Adaptive Delay or Impairment
- Capacity to Learn/Learning Impairments
- Communication Level
- Emotional Status
- Motor Abilities
- Social Ability
- Vision and Hearing
To learn more about evaluation, visit Education Assessments.
The child’s care team will provide parents with health care goals. Each provider may have certain goals that relate to particular treatment objectives. Some may be short-term goals, while others are long-term. School administrators may concentrate on educational goals, while an orthopedic surgeon may be more interested in mobility goals. Home care providers may concentrate on skill sets required to obtain self-care, independence and quality of life. In general, the top ten long-term goals for an individual with Cerebral Palsy include:
- Manage primary conditions
- Prevent and manage complications, associative conditions and co-mitigating factors
- Control pain
- Optimize mobility
- Maximize communication
- Maximize learning potential and special education opportunities
- Encourage social and peer interactions
- Foster self-care and promote life skills
- Maximize independence and Self-Sufficiency
- Enhance quality of life and well-being
To learn more about goals, visit The Goals.
Most children with Cerebral Palsy can live long, happy, quality lives. Admittedly, their care may involve more visits to the doctor, require therapy or medications, and perhaps surgery. The severity level, extent and location of impairment, pain levels and ability to function all play a significant role in a person’s life span. In addition, managing Cerebral Palsy involves proper management of the child’s primary and associative conditions. Co-mitigating factors like chocking as a result of oral motor dysfunction, weight loss as a result of improper nutrient levels, or complications from seizures are all co-mitigating factors that are emergent and require proper and timely management, or it may put the child at risk for diminished life span.
As is the case with all conditions, acknowledging and managing symptoms will help to minimize risk, maintain quality of life, and optimize life span.
To learn more, visit Life Expectancy of Cerebral Palsy.
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 support and funding, education, or various services which may be required.
- Care at home
- Home health care services
- Child care and respite
- Personal assistance and service dogs
- Nutrition and Meal plans
- Mobility and rehabilitation plan
- Sports, recreation and play
- Socialization plan
- Accessible homes and home modifications
- Vehicle modifications and adapted driver’s licensure
To learn more, visit Care at Home.
- Obtain diagnosis and acquire medical records
- Assemble a care team
- Assess abilities
- Determine goals
- Create, implement and monitor a coordinated comprehensive medical care plan
- Maintain records
To learn more, visit Six-Step Treatment Plan for Cerebral Palsy.
- Medication and drug therapy
- Assistive technology
- Complementary and alternative medicine
To learn more, visit Treatment of Cerebral Palsy.
- Children’s Health Insurance Plan, or CHIP
- Energy Assistance (Weatherization Assistance Program or Low Income Energy Assistance Program)
- Medicaid and Medicaid Waivers
- Supplemental Nutrition Assistance Program, or SNAP
- Supplemental Security Income, or SSI
- Social Security Disability Insurance, or SSDI
- Temporary Assistance for Needy Families, or TANF
- Women, Infant and Children Supplemental Nutrition Program, or WIC
To learn more, visit Government Assistance.
- Individualized Family Service Plan, or IFSP – 0 to 2 years
- Individualized Education Evaluation, or IEE
- Individualized Education Program, or IEP – 3 to 21 years
- Individualized Health Plan, or IHP
- Individualized Transition Plan, or ITP – Transition into Adulthood Plan – 16 to 21 years
- Early Intervention – Birth to 2 years
- Early Head Start – Birth to 2 years
- Early Childhood Intervention – 3 to 5 years
- Head Start – 3 to 5 years
- Kindergarten to Secondary Education – 6 to 16 years
- Transition Planning for Adulthood – 14 to 16 years
- Transition into Secondary Education/Adulthood – 16 to 21 years
- MyChild™ Call Center Assistance
- MyChild™ Online Inquiry
- MyChild™ Product and Service Provider Lists
- MyChild™ Resource Kits
- MyChild™ Cerebral Palsy Foundation/li>
- MyChild™ Inspiration
- The CP Blog
- The CP Forum
- The CP Facebook
To learn more, visit MyChild™ Resources.
- Non-government organizations, or NGOs
- Community-based organizations, or CBOs
- Faith-based organizations, or FBOs
- Cerebral Palsy organizations
- Disability organizations
- Community Support: Role of Federal Government
- Community Support: Role of State and Local Government
To learn more, visit Community Support and Funding Service.
- Legal services
- Health insurance
- Estate planning, wills and trusts
- Financial planning and tax preparation
- Post-Secondary Transition
- Career Skill Development
- Life Skills
- Independence and Self-Sufficiency
- Housing Assistance
- Money Management
- Vehicle Modifications and Adapted Driver’s Licensure
- Social Security Disability Insurance
To learn more, visit Transitioning Into Adulthood.
- Employment and Career Advancement
- Financial Independence
- Health and Fitness
- Hobbies, Interests and Activities
- Dating and Relationships
- Safety and Personal Protection
- Sports, Recreation and Play
To learn more, visit Maturing with Cerebral Palsy.
To learn more about the plan, visit The Plan.
Medical professionals are only required to keep medical records for an established number of years. After that point, records can either be stored or destroyed. Some opt to keep the records if care is ongoing. It is recommended that parents maintain a home file with the child’s records. Records are useful when setting goals, evaluating progress, communicating with others, preparing tax records, and for applying for aid. They may become essential in estate planning and care in the event a parent passes. Having documents organized in a file can make retrieval more efficient, when and if needed.
- Ten Benefits of Maintaining a Child’s Health Records
- Medical Records: Frequently Asked Questions
- Types of Records to Maintain
To learn more, visit Record Keeping.