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Getting Good Health Care


Getting Good Health Care Prepared and funded through collaboration between: The Developmental Disabilities Council of Washington, The University of Washington Center ... – PowerPoint PPT presentation

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Title: Getting Good Health Care

Getting Good Health Care
Prepared and funded through collaboration
betweenThe Developmental Disabilities Council
of Washington,The University of Washington
Center on Human Development and Disability,
Northwest Center, and the Washington State
Division of Developmental Disabilities
Project Staff
  • Sharan Brown, JD, EdD
  • Principal Investigator
  • Kathleen Watson, PhD, RN
  • Project Director/Trainer and Parent
  • Esther Moloney
  • Project Assistant and Parent

Health Care Providers
  • Includes many different types of providers
  • Nurse Practitioners
  • Family Physicians
  • Internists
  • Neurologists
  • Physician Assistants
  • Occupational and Physical Therapists
  • Psychiatrists
  • Pharmacists

Primary Care Providers
  • Those who provide basic health care for a person
    on a long term basis. Usually expected to
    coordinate the persons care with other
  • Family Medicine (MD)
  • Internal Medicine (MD)
  • Nurse Practitioner (ARNP)
  • Osteopath (DO)

Health Promotion A Paradigm Shift
  • Past emphasis on prevention of disabling
    conditions. Neglect of individual health.
  • New focus on evaluating and improving the health
    of individuals, prevention of secondary
    conditions and chronic illness

(Rimmer, 1999)
Detective Work
  • Communication often happens through behavior.
  • It is up to YOU to figure out what the behavior
    might mean.
  • It is up to YOU to see that something is done
    about the problem that is causing the behavior.
  • What happens if YOU do not take this

What Do You Want from A Provider?
  • Positive attitude toward persons with
  • Willingness to accept available funding.
  • Skill, expertise and experience with people who
    have disabilities.
  • Positive chemistry with individual and their

Why Is It So Difficult to Find a Good Provider?
  • Funding for health care is bad and getting worse.
  • Few providers have training or experience in
    providing care to persons with disabilities.
  • Providing care to persons who are non-verbal,
    have communication problems or behavior problems
    is challenging and time-consuming.
  • Health care providers can also be affected by
    stereotypes and negative attitudes, fear of the

Provider Experiences
  • Last minute cancellations due to staffing or
    transportation issues.
  • Person comes with advocate who has no information
    on history or current problem.
  • Person returns for follow-up and recommendations
    have not been followed or the results have not
    been documented.

Finding a Health Care Provider
  • Family members can ask their own physician to
    provide care for the person.
  • Get your physician or other HCP to make
  • Get names from friends, case managers, parents,
    local Arc chapter or hospital personnel.

How Can We Get Better Care?
  • In the long term be informed and VOTE for better
  • In the short term
  • Be proactive consumers of health care.
  • Be more knowledgeable.
  • Make it easier for providers by giving them the
    information and assistance they need.
  • Be on top of communication and follow-through.

The Team
  • Participant-its their health!
  • Advocate- either family or direct care provider.
    You have information critical to the health care
    provider and are essential to follow-through with
  • Health Care Provider- medical expertise.
  • Office Staff- access to provider!

Provider Office Staff
  • Appointment scheduler and nurse.
  • They are the gatekeepers for the provider.
  • Keep a record of their names and roles.
  • Call them for advice when you are not sure how to
    proceed or you need more information.

Important Roles of the Advocate
  • Accompany and support the individual in a strange
  • Assist the individual to participate in the visit
    to their maximum potential.
  • Facilitate communication between provider and

Important Role of the Advocate(contd)
  • Provide the health history and other necessary
  • Explain the current problem/concern and how it is
    different from the persons normal baseline
  • Ask questions, clarify recommended therapy,
    document the recommendations and follow up to
    make sure they are carried out.

What Providers Want from Advocates
  • Clarify how the present situation differs from
  • Suggest ways to interact.
  • Enlighten the provider as to the individuals
    quality of life and relationships.
  • Clarify treatment goals. (e.g., complete
    eradication of seizures versus maintain level of
    alertness and quality of life)

Making the Appointment
  • Request the best time of day
  • First appointment in morning or after lunch if
    waiting is an issue.
  • Morning or afternoon as needed for staffing or
  • Ask for more time if needed
  • A complicated health problem.
  • Communication needs.
  • Behavioral challenges.
  • Multiple concerns

Preparing for the Visit
  • Anxiety at the point of care may manifest as SIB
    or aggression.
  • Schedule a familiar and knowledgeable staff
    member to accompany the person.
  • If possible, desensitize prior to the appointment
    by visiting the office for a dry run.

Preparing for the Visit
  • Easy on and off clothing for individual.
  • Snack or diversions for waiting.
  • Any hygiene supplies or change of clothes needed
    in case of long wait.
  • Copy of medical coupon or insurance card.
  • Written and dated copies of health information to
    leave with provider.

Need to Create A Written Health History for Every
  • Individual cant provide it themselves.
  • Parent or family member may not be available, now
    or in the future.
  • Residential staff may not have the information
    due to staff turnover or client move.
  • Critical information can become lost or
    unavailable over time.

Important Categories of Health Information
  • Contact and billing information.
  • Past history and long-term health conditions.
  • Normal baseline status, including the persons
    abilities and level of function.
  • Current problem or issue.

Contact and Billing Information
  • Current residence address and phone.
  • Advocate name and phone.
  • Guardianship status.
  • Parents/guardians address and phone.
  • Emergency contact address and phone.
  • Insurance and medical coupon information.
  • Preferred pharmacy name and phone.

Medical History Summary
  • Past diagnoses.
  • List of ages and causes of deaths of family
  • Dates of major illnesses, injuries, surgeries.
  • Immunization dates.

Medical History Summary (contd)
  • Allergies what causes a problem and what happens
    (eg, rash, headache, nausea, etc).
  • List of current health conditions or diagnoses.
  • Names and specialties of current or recent health
    care providers.
  • List of all current medications and supplements,
    including name, amount, frequency, reason, date
    started, any side effects noticed.

Current Status
  • Approximate level of understanding and how to
    best communicate.
  • Ability to make own health care decisions.
  • Functional abilities.
  • Current living situation.
  • Current support.

Current Health Issue or Problem
  • What is the concern?
  • How does it differ from baseline status or
  • How long has it been going on?
  • Does anything make it worse or better?
  • What has been tried?
  • How has it worked?

Being Proactive
  • Be direct and stay on topic-it saves time.
  • Ask questions if you need clarification.
  • Express any concerns you have about the
  • Request that recommendations and instructions be
    written down for you.
  • Be sure to get written instructions for new
    medications and medication changes.

Following Up
  • Make detailed notes in the participants record
    about the visit.
  • Share findings and recommendations with all
    involved staff, parent or guardian.
  • Get medication change information to other staff
    or delegating nurse ASAP.
  • Alert all staff to watch for intended effects and
    possible side effects of new medications or
    dosage changes.
  • Document any changes for next visit to provider.
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