Getting Good Health Care

Prepared and funded through collaboration between:

The 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 person’s care with other providers:– 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 responsibility?

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.

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.

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

recommendations. 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 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.

The Team Participant-it’s 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!

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 environment.

Assist the individual to participate in the visit to their maximum potential.

Facilitate communication between provider and individual.

Important Role of the Advocate(cont’d) Provide the health history and other

necessary information. Explain the current problem/concern and

how it is different from the person’s normal baseline status.

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 baseline. Suggest ways to interact. Enlighten the provider as to the individual’s

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 transport.

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 Resident Individual can’t 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

person’s 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 members. Dates of major illnesses, injuries,

surgeries. Immunization dates.

Medical History Summary (cont’d) 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

behavior? 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

recommendations. 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 participant’s 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.