Getting Good Health Care

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.