1. Getting Good Health Care

2. 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

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

4. Health Care Providers  Includes many different types of providers: –Nurse Practitioners –Family Physicians –Internists –Neurologists –Physician Assistants –Occupational and Physical Therapists –Psychiatrists –Pharmacists

5. 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)

6. 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)

7. 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?

8. 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.

9. 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.

10. 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.

11. 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.

12. 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.

13. 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!

14. 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.

15. 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.

16. 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.

17. 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)

18. 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

19. 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.

20. 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.

21. 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.

22. 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.

23. 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.

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

25. 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.

26. 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.

27. 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?

28. 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.

29. 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.