|
Community
Health Care for
Adults and Elders with Developmental Disabilities Research and Training
A Project of the University Center for Excellence in
Developmental Disabilities (UCEDD)
funded by the Washington State Developmental Disabilities Council
(DDC)
|
|
|
AEDD
Home > Curricula
for Family and Residential Providers >
Text version of Getting
Excellent Medical Care |
Contact |
|
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
- Only advocates who are legal guardians or have a
“medical power of attorney” can access another adult’s medical
information and concerns.
- All other advocates must obtain written permission
from a legal guardian or the person with the “appropriate
power of attorney”.
- Advocates must get permission directly from adults without
legal guardians or subject to a medical power of attorney.
- 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
- Ask your
own physician or ask for referrals
- 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 physicianor other health care provider
- Competence
- Relative ease of access
- 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:
- Stay healthy - or as needed:
- obtain a faster, more accurate diagnosis,
- the best therapy and
- continuity of care
Making the appointment
- Try to give the specific reason so
that the office staff can allocate enough time.
- Request additional time for
communication challenges, complicated problems, numerous concerns
etc.
- Don’t be shy about asking about costs, the doctor’s credentials etc.
- Ask for
the first appointment in the morning or after lunch.
- 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
- Patient’s current address and phone
- Advocates current address and phone
- Emergency contact’s address and phone
- Pharmacy’s name, address and phone
- Payment information e.g. Medicaid coupon
or health insurance.
Prepare a summary of the medical history including:
- Past diagnoses
- dates of major illnesses
- dates of major surgeries or treatments
- dates of immunizations
- Ages and causes of family deaths or major health problems
- Allergies
- Adverse reactions or allergies to any medications used in the past
- A list of
health care providers or specialists the patient is currently seeing
or has seen in the past year
- Helpful: the patient’s approximate level of understanding
and communication accommodations that are needed.
Medical history - The following
information is helpful:
- Functional abilities
- Current living situation
- Current support
- Ability to comprehend the nature of the illness
- Ability to make a medical decision
independently and give informed consent
- Ability to understand instructions
for the treatment plan.
- Medical History
- Mail to the health provider for review before
the visit.
- Update at least annually
Write down and take to the appointment:Current symptoms
- How
long have they occurred
- What triggers them or makes them worse
- What--if anything--have you done to treat
them
- Special concerns about these
symptoms
Is the patient seeing other health care providers?
- List other current health
care providers
- 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
- Prescription and over-the-counter
plus vitamins and herbal compounds
- List dates started, dosages, frequency
and any side-effects that were encountered.
List any concerns you would like
to discuss:
- Prioritize 2 or 3 issues of greatest concern
- Retain other concerns on the list
for the next visit
Preparation on the day of the visit:
- Good hygiene for patient confidence - showering,
brushing teeth etc..
- Clothes
- freshly laundered, in good repair
- that are easy to remove(bottoms,
tops with few buttons)
- Bring games, books, crafts if the wait
is often long.
- Bring picture books, picture cards etc. that will help the
patient communicate with the health care provider.
At the Health Care Provider’s
Office
- Don’t be shy or embarrassed about anything
- Give as much information as possible
and try to be specific (Give written or oral
information)
- Ask Questions and more questions
- Share your thoughts with the health care
provider
- If you are worried, say
so
- If you don’t think a test, procedure
or prescription is necessary,
say so and ask
for more information
- If you
don’t plan to follow his/her advice or directions,
say so--and
ask for other
advice that is easier
to follow.
- Don’t hesitate
to talk about costs
- Ask if you can quickly
summarize the major
points, and what
will be done
once the
patient is at
home
- Stay focused on what
the patient came
in for--keep social chit-chat
to a
minimum
Take these words
to the appointment
- Please tell me more
about that.
- What
does that mean in simple
English?
- Could
you explain that to me again?
- Could you write
that
down for me?
- Where can
I find
more information
about
this subject?
- You
seem rushed.
When
can I
call
you to talk
about
this
in
more detail?
Questions
to
ask health
care
providers
- What
can we
do to
prevent decline
in health?
- What
resources are
available?
- What
can we
expect to
happen in
the future?
- What
changes in
nutrition can
help his/her
health?
- What
can we
look for
that would
indicate a
problem?
- Are
there certain
exercises that
would be
particularly helpful
for him/her?
Ask
about prescribed
medications:
- What
is the
medicine for?
- How
is it
to be
taken? For
how long?
- What
are the
most common
side effects
and what
should be
done if
they occur?
- Is
this medicine
safe to
take with
the other
medicines
or
supplements
the
patient
is
taking?
- What
food,
drink
or activities
should
be
avoided
while
taking
it?
After the visit
- Write down the major points of the treatment plan.
- Call the office if you can’t
remember or don’t understand something that was discussed.
- 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
back
to AEDD home page
Updated 02/7/05
AEDD at University of Washington
Box 357920, Seattle, WA 98195-7920
Copyright © 2002 by
University of Washington. Permission is granted to copy all materials written
by the University of Washington for educational, noncommercial purposes provided
the source is acknowledged. See Copyright Statement
for more information