Improving Healthcare for Persons with Disabilities: What is needed now

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Improving Healthcare for Persons with
Disabilities What is needed now?
This work was supported by grant H133B040034
from NIDRR/DOE
August 8, 2007 Gloria Krahn
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About Us

• The RRTC on Health Wellness contributes to
  the reduction of health disparities for persons
  with disabilities through an integrated program
  of research, training, technical assistance and
  dissemination.
• www.healthwellness.org

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Overview of this Webcast

• The issueshealth disparities of people with
  disabilities
• On-line survey of persons with disabilities
• Surveys of physicians
• Literature review
• Summary of barriers and sample facilitators
• Questions and Answers

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How Health and Disability Differ

• Health is different from Disability
• Health as a complete state of physical,
  social and mental wellbeing and not merely the
  absence of disease
• Disability as reduction in function, or need
  for assistance
• A person with a disability IS able to be healthy

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Health Disparities of People with Disabilities

• People who self-report disability also report
• Poorer health
• Less use of clinical preventive services
• More difficulty in accessing needed health
  services

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Contributors to Health Status

• Health Care Access
• Individual Healthy Behaviors
• Environment
• Genetics
• Social Circumstances

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Elements of an Effective Care System

• Consumer choice
• Capacity to identify persons with disabilities
• Prevention/Intervention for secondary conditions
• Interdisciplinary, comprehensive care
• Accessible urgent care
• Service integration and management
• Ireys et al., 2002

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How we gathered information

• I. On-line survey
• II. Review of physician surveys
• III. Review of published studies and national
• and international reports

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I. Purpose of Online Survey of PWD

• To identify aspects of health care settings that
  are important to people with disabilities
• To identify barriers to obtaining health care
  experienced by people with disabilities

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I. Methods of Online Survey

• Survey Instrument
• Listed aspects of health care and asked how
  important each was on 5 point scale
• Asked if there was a time in last 12 months when
  did not get needed health care
• If yes, choose reasons from a list and rank them
  in order of importance

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I. Methods (contd)

• Procedures
• On-line survey
• E-mail participation request with survey link
  sent to national disability listservs (i.e. ILRU)
• Recipients were encouraged to forward the message
  on to others who might be interested

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I. Responses to Online Survey

• Hoped for 200 responses

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I. Responses to Online Survey

• within 2 weeks we received 943!

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I. Who Answered?

• Average age 45 years old
• 2/3 female, 1/3 male
• 2/3 urban, 1/3 rural
• Primarily white (91), non-Hispanic (96)
• Respondents from around the USA

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I. Who answered?

• Type of disability
• Mobility (41)
• Multiple disabilities (40)
• Hearing (8)
• Vision (4)
• Cognitive (3)
• Other (5)

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I. What was important for good health care?

• Factors rated as very important
• Health insurance 95
• Provider attitudes 89
• Provider knowledge 81
• Attitudes of clinic staff 76
• Location of clinic 38
• Aids and services 31
• RRTC on Health Wellness, 2007

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I. Insurance issues (95)

• Finding provider who accepts my insurance
• Care not covered by insurance
• Other costs (e.g. co-pay) not covered by
  insurance
• 90 of people with disabilities have some form
  of insurance
• Physicians reimbursement, especially for longer
  appointments

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I. Providers with the Right Attitude (89)
and Knowledge (81)

• Difficult finding providers with appropriate
  knowledge and willingness to treat people with
  disabilities
• Physicians limited understanding and comfort
  need for additional education and resources

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I. Physical Barriers to Good Care

• Transportation to get to health care provider
• Physicians maneuvering assistive devices in
  exam rooms

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I. Unmet Health Care Needs

• 34 of respondents said there was a time in the
  last 12 months when they needed health care but
  did not get it

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I. Unmet Health Care Needs

• Most important reasons for not getting care
• It cost too much
• Couldnt get an appointment
• Not covered by insurance
• Couldnt find provider who understands or was
  willing to treat my disability
• No transportation or providers office was too
  far

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Two Physician Surveys on Caring for Person with
Disabilities

• National survey of physicians wellness practices
  with persons with physical disabilities (2003)
• Oregon survey of physicians medical care
  practices with persons with physical disabilities
  (2006)

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II. Physician Reported Barriers to Caring for
Adults with Physical Disabilities
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II. Physician Requested Resources to Treat
Patients with Disabilities

• Resource guides (42)
• Written educational materials (40)
• Practice guidelines (37)
• Telephone or e-mail hotline (37)
• Topical CME courses (28)
• References for equipment (28)
• Coding guidelines (25)
• Computer-based CE (17)
• Mini-fellowship training (14)
• Blasco et al.,(in preparation)

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III. Literature Review Methods

• Search performed
• articles addressing healthcare barriers and
  facilitators to accessing health care for people
  with disabilities
• published in the preceding 5 years
• relevant to the US health care system.

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III. Literature Review Methods

• Findings are currently being summarized
• They are similar to findings from the surveys,
  with added examples

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From the Surgeon General

• 2002 Closing the Gap A National Blueprint to
  Improve the Health of Persons with Mental
  Retardation
• 2005 - Call to Action to Improve the Health and
  Wellness of Persons with Disabilities

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IV. Checklist that Summarizes Barriers and
Facilitators

• Person
• Provider
• Health Care Clinic
• Systems

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Barriers for Persons with Disabilities Families

• Understanding my health in the context of
  disability
• Knowledge about what services I need
• Fear
• Communication skills to advocate for what I need
• Family support and responsibilities

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Sample Facilitators for Persons with
Disabilities Families

• Public Awareness
• Right to Know about breast cancer
• Training Programs
• SHIELDS (Kailes and NRH)
• PATHS (RRTC on Health Wellness)
• Manuals
• Enrollee benefit book
• Health care organizers

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IV. Barriers for Health Care Providers

• Reimbursement rates
• Recognizing that persons with disabilities can be
  healthy
• Feeling comfortable in providing care to patients
  with disabilities
• Knowledge about general needs in the context of
  disability, and specific needs

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Sample Facilitators for Health Care Providers

• Billing code strategies
• Resources
• Information on disabilities and related health
  conditions (e.g., CHAPS by Lennox)
• Disability Etiquette (?)
• Training
• Medical school Disability Modules
• Continuing Education
• Consultation/Mentoring

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IV. Clinic Level Barriers

• Inaccessible facilities
• Inaccessible equipment
• Systems procedures that support care of persons
  with disabilities (e.g., scheduling, alternative
  formats)
• Training and coordination of clinic staff

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IV. Sample Facilitators for Clinics

• Accessibility checklists (e.g., OHCUP by RRTC
  HW)
• Information on accessible equipment
• Procedures to support care of persons with
  disabilities (e.g., CLIPS by RRTC HW)
• Training and coordination of clinic staff (e.g.,
  CLIPS)

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IV. Sample Facilitators for Systems

• Health insurance reforms
• Insurance groups working to address needs of
  persons with disabilities (e.g., Kaiser
  Permanente, CA Inland Empire)
• Improved transportation systems
• Surgeon General reports (2002, 2005)
• Senator Harkins Wellness Bill

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V. Questions and Answers

• ?