Getting Good Health Care

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Getting Good Health Care
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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
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Project Staff

• Sharan Brown, JD, EdD
• Principal Investigator
• Kathleen Watson, PhD, RN
• Project Director/Trainer and Parent
• Esther Moloney
• Project Assistant and Parent

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Health Care Providers

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

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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
  providers
• Family Medicine (MD)
• Internal Medicine (MD)
• Nurse Practitioner (ARNP)
• Osteopath (DO)

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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)
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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
  responsibility?

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What Do You Want from A Provider?

• Positive attitude toward persons with
  disabilities.
• Willingness to accept available funding.
• Skill, expertise and experience with people who
  have disabilities.
• Positive chemistry with individual and their
  advocate.

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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
  unknown.

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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.

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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
  recommendations.
• Get names from friends, case managers, parents,
  local Arc chapter or hospital personnel.

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How Can We Get Better Care?

• In the long term be informed and VOTE for better
  funding.
• 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.

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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
  recommendations.
• Health Care Provider- medical expertise.
• Office Staff- access to provider!

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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.

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Important Roles of the Advocate

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

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Important Role of the Advocate(contd)

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

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What Providers Want from Advocates

• Clarify how the present situation differs from
  baseline.
• 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)

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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
  transport.
• Ask for more time if needed
• A complicated health problem.
• Communication needs.
• Behavioral challenges.
• Multiple concerns

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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.

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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.

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Need to Create A Written Health History for Every
Resident

• 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.

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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.

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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.

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Medical History Summary

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

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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.

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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.

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Current Health Issue or Problem

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

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Being Proactive

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

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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.