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Community Health Care for Adults and Elders with Developmental Disabilities Research and Training

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Text version of Getting Excellent Medical Care

Getting Excellent Medical Care

Quote from a health care provider:
“Advocates provide an important role in disease prevention and getting good medical care for the adult with developmental disabilities.”

Quote from a health care provider:
A caring, knowledgeable advocate must always accompany the patient to the health provider’s office and participate as much as necessary by providing all of the information, ask the questions and subsequently ensure that diagnostic tests are done, all specialists are seen, follow-up visits are attended, and finally the treatment plan is followed.

Advocates for Adults with Developmental Disabilities and the Medical Privacy Act of 2003

  1. Only advocates who are legal guardians or have a “medical power of attorney” can access another adult’s medical information and concerns.
  2. All other advocates must obtain written permission
    from a legal guardian or the person with the “appropriate
    power of attorney”.
  3. Advocates must get permission directly from adults without
    legal guardians or subject to a medical power of attorney.
  4. In all cases the adult patient with MR has the right to deny
    medical information access to any advocate.

Finding a physician or other health care provider

  1. Ask your own physician or ask for referrals
  2. Get physician or other health care provider names from friends, long-term staff, case managers, other parents, the local ARC chapter or hospital personnel.

Criteria for choosing a physician or other health care provider

  1. Competence
  2. Relative ease of access
  3. Emotional “chemistry” between the doctor and adult patient plus you as a team.

The Very Important Role of the Advocate:

Must be an active participant to help the participant:

Making the appointment

  1. Try to give the specific reason so that the office staff can allocate enough time.
  2. Request additional time for communication challenges, complicated problems, numerous concerns etc.
  3. Don’t be shy about asking about costs, the doctor’s credentials etc.
  4. Ask for the first appointment in the morning or after lunch.
  5. If medical records, lab results, X-rays etc.. have been sent, ask if they have arrived.

Prepare for the visit - Write down all current information

  1. Patient’s current address and phone
  2. Advocates current address and phone
  3. Emergency contact’s address and phone
  4. Pharmacy’s name, address and phone
  5. Payment information e.g. Medicaid coupon or health insurance.

Prepare a summary of the medical history including:

  1. Past diagnoses
  2. dates of major illnesses
  3. dates of major surgeries or treatments
  4. dates of immunizations
  5. Ages and causes of family deaths or major health problems
  6. Allergies
  7. Adverse reactions or allergies to any medications used in the past
  8. A list of health care providers or specialists the patient is currently seeing or has seen in the past year
  9. Helpful: the patient’s approximate level of understanding and communication accommodations that are needed.

Medical history - The following information is helpful:

  1. Functional abilities
  2. Current living situation
  3. Current support
  4. Ability to comprehend the nature of the illness
  5. Ability to make a medical decision independently and give informed consent
  6. Ability to understand instructions for the treatment plan.
  7. Medical History
  8. Mail to the health provider for review before the visit.
  9. Update at least annually

Write down and take to the appointment: Current symptoms

  1. How long have they occurred
  2. What triggers them or makes them worse
  3. What--if anything--have you done to treat them
  4. Special concerns about these symptoms

Is the patient seeing other health care providers?

  1. List other current health care providers
  2. A consult with other health care specialists may be helpful and drug interactions may be prevented.

Write down and take to appointment: All current medications

  1. Prescription and over-the-counter plus vitamins and herbal compounds
  2. List dates started, dosages, frequency and any side-effects that were encountered.

List any concerns you would like to discuss:

  1. Prioritize 2 or 3 issues of greatest concern
  2. Retain other concerns on the list for the next visit

Preparation on the day of the visit:

  1. Good hygiene for patient confidence - showering, brushing teeth etc..
  2. Clothes
  3. Bring games, books, crafts if the wait is often long.
  4. Bring picture books, picture cards etc. that will help the patient communicate with the health care provider.

At the Health Care Provider’s Office

  1. Don’t be shy or embarrassed about anything
  2. Give as much information as possible and try to be specific (Give written or oral information)
  3. Ask Questions and more questions
  4. Share your thoughts with the health care provider
  5. If you are worried, say so
  6. If you don’t think a test, procedure or prescription is necessary, say so and ask for more information
  7. If you don’t plan to follow his/her advice or directions, say so--and ask for other advice that is easier to follow.
  8. Don’t hesitate to talk about costs
  9. Ask if you can quickly summarize the major points, and what will be done once the patient is at home
  10. Stay focused on what the patient came in for--keep social chit-chat to a minimum

Take these words to the appointment

  1. Please tell me more about that.
  2. What does that mean in simple English?
  3. Could you explain that to me again?
  4. Could you write that down for me?
  5. Where can I find more information about this subject?
  6. You seem rushed. When can I call you to talk about this in more detail?

Questions to ask health care providers

  1. What can we do to prevent decline in health?
  2. What resources are available?
  3. What can we expect to happen in the future?
  4. What changes in nutrition can help his/her health?
  5. What can we look for that would indicate a problem?
  6. Are there certain exercises that would be particularly helpful for him/her?

Ask about prescribed medications:

  1. What is the medicine for?
  2. How is it to be taken? For how long?
  3. What are the most common side effects and what should be done if they occur?
  4. Is this medicine safe to take with the other medicines or supplements the patient is taking?
  5. What food, drink or activities should be avoided while taking it?

After the visit

  1. Write down the major points of the treatment plan.
  2. Call the office if you can’t remember or don’t understand something that was discussed.
  3. Date all records and notes and keep in a notebook or expanding file that would be easy to take to each health provider’s visit.

Quote from a health care provider:

“Ultimately the care, skill and concern of the daily caregiver/advocate are the most important factors in following the treatment plan”

Resources for this presentation

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Updated 02/7/05


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