Raising a child who has cerebral palsy creates fresh challenges for the whole family. Embracing a life with cerebral palsy requires planning, organization, perspective, adaptation, and doses of inspiration.

For parents, reviewing their child’s care plan provides a chronology of the choices they’ve made, the steps they’ve taken, the learnings they’ve experienced, and a glimpse at their hopes and dreams for tomorrow; a true source of pride and accomplishment. Many learn how to embrace a life with cerebral palsy somewhere within the journey of doing so.

A care plan allows parents to share information between members of the care team and tracks a child’s treatment, including tests, diagnosis, and medical care throughout their life. The care plan is a diary of events, a scrapbook of medical records, a game plan for future treatment goals, and a collection of test results. It is a history of the child’s care and progress.

Ten Benefits of Maintaining a Child’s Health Records

  • Organization – easy retrieval of documents when needed
    Share with care providers – share information between members of the care team
  • Treatment care planning – track treatment, including tests, diagnosis and medical care for use in care plans, goal setting and evaluating progress
  • Efficiency – requesting records can be expensive and time consuming delaying the ability for other providers to begin care
  • Government assistant and benefit programs – proof of condition, expenses and financial status is often requested to qualify for disability benefit programs
  • Education planning – Federal guidelines mandate that a child is evaluated for special needs educational programs through Independent Education Planning (IEP) sessions
  • Insurance reconciliation - health insurance billing and compensation requires copies of bills, treatment and proof of expenditure for reimbursement of medical bills
  • Tax credit and benefits - tax credits and benefits are often available to those with exorbinant medical expenses or dependent upon financial status
  • Caretaking – those in charge of caring for a child with cerebral palsy will better understand the type of cerebral palsy, its associative conditions and co-mitigating factors
  • Vocational planning and career development – workforce development specialists will be able to better provide career focus and training if the activity restrictions and participation constraints are known and if they can be overcome.
  • Estate planning – provides a document of care to be transferred to others in the unfortunate event the parent or legal guardian is no longer able to provide for the child.

Need more information on financial planning and future care options ?

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Frequently Asked Questions

How long is a medical provider required to retain a patient’s records?

In most states medical records are only required to be kept for a specified number of years by the medical professional that originally ordered or prescribed the medical care being requested. States differ in their guidelines. After that point they can either place them in storage or have them destroyed. Some opt to keep the records if care is still ongoing.

Providers typically keep child records for 3 to 10 years beyond the age of 18 or 21, whereas they are only required to keep adult medical records for six years or more after last visit. These guidelines vary by state.

There are important variables that apply to the length of time a physician may choose to retain their records. State and federal laws apply, but medical boards and physician associations also make recommendations. Typically the provider will keep the records to comply with the strictest guidelines that apply to them and their circumstances.

Medical records provide the physician with a reminder of what type of care was provided to the patient, and the reasons for that care. A medical provider maintains patient records to provide information about the patient’s care to other health care professionals who may be required to treat the patient. Providers also keep records to document that appropriate care was provided to the patient, proving professional standards of care in the event a complaint is filed against them.

There are circumstances where the ownership of a patient’s medical records is passed on to another entity. If the medical provider should die, sometimes the records are maintained in the same practice if co-owned by other practitioners. If a medical office closes, they typically try to notify the patients of the new development and provide the patient with options in either obtaining their records or for storage retrieval.

For efficiency, parents should ask for a copy of the child’s medical records at the time a physician is explaining test results or prescribing treatment. For example, if the child’s pediatrician suspects growth delay and shows you a graph of the growth chart and where your child’s progress falls on the chart, you may simply ask “Can I get a copy of that to put in my child’s home medical records?” They most likely will provide a copy at the front desk at check-out. To request medical records at a later time may incur administrative fees and require a time, usually 1-4 weeks, to comply with your request.

Who has rights to the patient’s medical records?

According to federal law, the patient (or the minor patient’s parent or legal guardian) has the right to formally request the following:

  • The right to view their medical records
  • The right to a copy of their medical records
  • The right to amend their medical records

If the patient has provided written permission, the caretaker in some situations is allowed access to the records.

Others have access to your records, as well, both legally and illegally. Some who may have legal access to your records include:

  • Insurance companies – The patient’s insurance company has the right to patient records.
  • Public safety officials – Public safety officials may require access to your records in emergency situations.
  • Law enforcement officials – If abuse, neglect, domestic violence, wounds or harm is encountered, law enforcement officials may gain access to your records.
  • The government – If receiving Medicaid or Medicare your records may be required.
  • Employers - Under certain circumstances, such as workers compensation, employers may gain access to your records.
  • Collection agencies – If the patient has not paid their bills in a timely fashion, the company billing the patient has the right to pursue collection of past due debt by turning files (whatever is legal under bill collection statutes) over to a collection agency.
  • Marketing companies – If a hospital opens a new wing, for example, and wants to announce the service to all those who have been patients during a certain timeframe, they may provide marketing firms with some of your contact information.

What is in medical records?

A patient’s records may contain doctor notes, nurse documentation, medical history, lab tests, lab reports, screens, examinations and evaluations. Lists of medications, interactions, and dosage levels are maintained. Medical providers also obtain records from other health care providers and use the materials as a basis for diagnosis or care. Billing and insurance documents are also maintained in a client’s records.

Who maintains the medical records?

Typically, the medical provider who provides the care, maintains the records. Hospitals maintain their own records.

Does a patient have access to all their records?

Typically a patient can gain access to the following medical records:

  • Any information provided to them about you by any doctor if that information was used to diagnose or treat
  • Diagnostic lab tests (blood, urine, ultrasounds, fetal heart strips, CT scans, or MRIs)
  • Physician notes
  • Test results

Hospital records must be obtained through the hospital records department.

There are some types of records, such as mental health records, that can be withheld if the provider believes by obtaining the records the patient may endanger themselves. A physician may deny access to the following under specific circumstances:

  • Doctor’s personal notes or observations (typically speculations, impressions or reminder but not actual diagnosis)
  • Information obtained by other practitioners, not used in diagnosis and the original practitioner is still in business. These records should be obtained by the original practitioner.
  • Information disclosed to the practitioner on the condition it be kept “confidential.”
  • Mental health records
  • Substance abuse records
  • Information the physician believes would cause the patient to harm him or herself.

How are medical records requested?

Requests for medical records can be made in writing or by filling out a medical release form the provider’s office may require. Typically, the provider has 1 to 4 weeks to comply or deny the request. If denied a reason should be provided. There may be an administrative fee for obtaining records that is for storage recovery, personnel time and copy costs.

Record Keeping Tips

It is recommended that parents maintain their own 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.

Types of records to maintain:

  • Accounting and financial planning
  • Caregiver, daycare and respite records
  • Educational records
  • Medical exams, evaluations and test results
  • Housing and living arrangements
  • Health insurance
  • Medications and drug therapies
  • Treatment and therapies
  • Surgeries
  • Assistive technologies
  • Alternative therapies
  • Estate planning
  • Legal advocacy
  • Taxes records
  • Career development and employment

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

FOR MANAGEMENT OF CEREBRAL PALSY