Keeping Good Medical Records

For people with intellectual and physical disabilities, who may not be able to describe their symptoms, keeping good medical records at home is essential for a number of reasons:

1. Many different specialists might be involved in their care and interdisciplinary communication doesn’t always happen. Important information can be lost if the caregiver is not prepared to share it.
2. The person may have several conditions that require medication. Multiple medications increase the possibility of interaction which may cause negative side effects. Many times, only the caregiver has the complete list of medications.
3. The person’s body may not work in a “normal” fashion so usual treatments may affect them differently. Past experience is often the best indicator of how a person will react. Remembering unusual situations is especially important for individuals who do not communicate verbally

These challenges make it very important that the person and their caregiver keep accurate and complete medical records. Our direct support staff and nurses are directly responsible for the health of all 140 adults with I/DD. At Fidelity House, we maintain a binder dedicated to each person that includes:

•        Copy of health history: This should include: a record of past illnesses and surgeries, allergies to medications or other substances, the person’s ability to complete daily activities, and how they get around. It should also include any early history with the origin and diagnosis of the developmental disability if it is known. Even if you do not have all of this information, include what you know.
•        List of current medications: including the name of the medication, the strength of the pills, how many to take, how often the medication is taken and why.
•        Running list of all medical visits and procedures: including any tests like x-rays or MRI’s.
•        Record of each medical visit with instructions for medication and treatments: Most medical offices can print these at the end of each visit or they can mail them to you.. The records may also be available on-line through a patient portal if you have access.
•        Up-to-date list of immunizations and health screening tests
•        Copies of guardianship or health care proxy information
•        Medical insurance card

The binder goes with us to medical visits and helps us to remember things like, “Jane didn’t tolerate that medication for anxiety. It made her more anxious and agitated.” It might also describe if a certain procedure was deferred and why. The complete history is very helpful when going to a new doctor or reminding the current doctor about something that happened. We empower caregivers to ask the medical doctor or specialist to make notes of any special strategies related to a patient’s disabilities. Being able to show documentation is much more useful to a doctor than verbal reports alone.

We always hope that health care providers will talk to each other and share information and some do. Electronic Health Records are supposed to help this communication, but information isn’t always consistently shared and may not be accurate; so it is essential to keep good records. I always tell staff, “Doctors are like detectives and they need accurate ‘clues’ to make the right diagnosis.” Good record-keeping helps you give doctors the best clues!

Author: Elizabeth R. Steele RN BSN MS CDDN, VP of Health Services and Supported Home Care

Beth began working at Fidelity House Human Services in 1988 and has worked at Fidelity House in various capacities as the Health Care Coordinator, Associate Executive Director, and Director of Health Services.  Her previous experience was in teaching health care paraprofessionals for the Greater Lawrence Department of Training and Development and several other agencies. She enjoys working with people with intellectual, developmental, and physical disabilities and the people who care for them. Her favorite part of the job is empowering caregivers through education and support.