MyChild™ Care Plan Process At-A-Glance

MyChild™ Care Plan Process At-A-Glance

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.

Components of the Care Plan Process At-A-Glance include:

• The Diagnosis
• The Process
• The Evaluation
• The Goals
• The Plan
• The Record Keeping

These components are outlined below.

The Diagnosis

The parent or legal guardian will 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 the child has. During the diagnosis process many screens and tests may provide relevant information to confirm or rule-out a diagnosis of cerebral palsy. For efficient retrieval, these should be stored in a child’s home medical record file. Steps include:

Document Cause of Cerebral Palsy

• Radiological findings of brain injury or abnormality – PVL, IVH, HIE, Cerebral Dysgenesis
• Cause of brain damage or abnormality – prematurity, low birth weight, asphyxiation, shaken baby, accident
• Timing of brain damage – prenatal, perinatal, postnatal, acquired, congenital, or genetic predisposition

Document Form 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

Obtain Medical Records

To learn more, The Diagnosis

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. Evaluation includes:

Mobility/Motor Impairment Evaluation

• Abnormal muscle tone
• Movement coordination and control difficulties
• Reflex irregularity
• Abnormal posture
• Abnormal balance
• Gross motor dysfunction
• Fine motor dysfunction
• Oromotor dysfunction (Feeding, swallowing, respiratory, speech and vocal)

Associative Conditions and Co-Mitigating Factors Assessment

• Cognitive, psychological and behavioral
• Gastrointestinal, nutritional and dietary
• Neurologic
• Oral health
• Orthopedic
• Respiratory
• Sensory
• Skin health

Activities of Daily Living Evaluation

• Bathing
• Dressing and undressing
• Eating
• Food preparation
• Grooming
• Housekeeping
• Leisure
• Mobility
• Personal hygiene
• Recreation
• Self-care
• Shopping
• Transferring (bed, chair, toiletry, etc)
• Walking
• Work

Family Dynamics and Socio-Economic Status Assessment

• 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

Education Assessment

• Health and motor abilities
• Vision and hearing
• Social and emotional status
• General intelligence
• Academic performance
• Communication status
• Assistive technology needs
• Special accommodations requirements

To learn more, The Evaluation

The Goals

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:

Top Ten

• 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

To learn more, The Goals

The Plan

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

Medical Care

• Six steps to a comprehensive care plan

Forms of Treatment

• Therapy
• Surgery
• Medication and drug therapy
• Assistive technology – global perspective
• Assistive technology – national perspective
• Complementary and alternative medicine

Government Assistance

• Children’s Health Insurance Plan (CHIP)
• Energy Assistance (weatherization program or low income energy assistance program)
• Medicaid
• Medicare
• Supplemental Nutrition Assistance Program (SNAP)
• Supplemental Security Income (SSI)
• Temporary Assistance for Needy Families (TANF)
• Women, Infant and Children Supplemental Nutrition Program (WIC)

Special Education

• Early Intervention
• 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

• Role of Federal Government
• Role of State and Local Government
• Non-government organizations (NGOs)
• Community-based organizations (CBOs)
• Faith-based organizations (FBOs)
• Cerebral palsy and disability organizations
• MyChild™ services

Professional Service

• 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
• Recreation
• Socialization
• Family planning

Maturing with Cerebral Palsy

• Aging with cerebral palsy
• Declaring your preferences
• Emergency preparedness

To learn more, The Plan

The Record Keeping

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.

• The Record Keeping

To learn more, The Record Keeping

Care Team and Care Plan Components for the Management of Cerebral Palsy

FOR MANAGEMENT OF CEREBRAL PALSY

• MyChild™ Care Plan Process At-A-Glance
• The Team
• The Diagnosis
• The Process
• The Evaluation
• The Goals
• The Plan
• The Record Keeping