Health Care Transitions for Women With Disabilities

1
Health Care Transitions for Women With
Disabilities

• Margaret A. Turk, M.D.
• Professor, Physical Medicine Rehabilitation
• SUNY Upstate Medical University
• Syracuse, NY

2
Workshop Plan

• Background information
• Case study
• Group identifies topic areas of interest

3
Transitions in Medical Care

• Childhood onset disability transition to adult
  care
• 1984 Surgeon General C. Everett Koop, MD,
  focuses on the needs of adolescents with chronic
  and disabling conditions
• 1989 convenes conference Growing up and Getting
  Medical Care Youth with Special Health Care
  Needs
• 2002 AAP Consensus Statement re Transitions

4
Transitions in Medical Care

• Adult onset disability return to primary care
  setting
• Routine adult health care setting
• Release of information re acute event detail of
  information
• Health care insurance coverage for services
  change to Medicaid/Medicare
• Absence of national acknowledgement

5
Transitions in Medical Care

• 90 of all children with disabilities will live
  beyond 20 years of age
• 30 or more of adolescents have at least one
  chronic illness or disability 1/3 of these
  conditions are moderate or severe
• Adolescents with chronic conditions experience
  more social isolation, suicide, and depression
  than their peers without chronic illness
• Focus needs to move beyond the chronic condition
  to include sexuality, substance use, smoking, or
  other lifestyle issues

6
Transitions in Medical Care

• Transition is a process
• Barriers are often encountered in processes
• Several barriers may be present in the move from
  Pediatric to Adult care for young people with
  disabilities including
• View of the adolescent or adult with disability
  as a perpetual child
• Readinessof adolescent or family
• Adult health care providers feeling inadequately
  trained
• View that caring for adults with disabilities is
  unprofitable

7
Transitions in Medical Care

• The American Academy of Pediatrics (AAP) states
  that all children, including those with special
  health care needs should have a medical home
• Medical home means a source of health care
  which is accessible, family centered, continuous,
  coordinated, and compassionate
• Children and adolescents with disabilities
  receive services from a network which often
  includes medical, social, and educational systems

8
Transitions in Medical Care

• Women with adult onset disabilities may receive
  case management services through insurance plans
  or a Medicaid waiver program.
• Medical home terminology is transferable.
• Network includes medical, social, vocational, and
  other community components.

9
Transitions in Medical Care

10
Transitions in Medical Care

• Transition requires planning and preparation.
• Where possible, the patient should engage in the
  process.
• A successful process requires a lead clinician
  willing to provide information or organize
  information.

11
Transitions in Medical Care

• Providing coordinated, comprehensive care across
  systems is challenging.
• The challenge is met through collaboration
  between the patient, family members,
  educational/vocational, social, and health care
  professionals.
• Providers of formal support must collaborate with
  providers of informal support.

12
Transitions in Medical Care

• Federal legislation influencing health care
  transition
• Rehabilitation Act of 1973 Public Law (PL)
  93-112 and 1990 Americans with Disabilities Act
  (ADA) PL 101-336
• Security Administrations Supplemental Security
  Income (SSI) Program Social Security Act, Title
  V and Personal Responsibility and Work
  Opportunity Act of 1996 PL 104-193
• The Ticket to Work and Work Incentives
  Improvement Act of 1999

13
Transitions in Medical Care

• Federal legislation influencing health care
  transition
• Childrens Health Insurance Program (CHIP) Title
  XXI of the Social Security Act
• Individuals with Disabilities Education (IDEA)
  PL 101-476

14
Transitions in Medical Care

• Information dissemination

• Emergency Information
• AAP/ACEP approved
• Physician listing
• Past history
• Problem list
• HIPPA
• aap.org/advocacy/
• emergprep.htm

15
Transition Planning ChecklistEarly stage - 10-12
years / Grade 5-7

• Self advocacy Educate in describing health
  condition family review encourage asking
  questions
• Independent health care behaviors Discuss meds,
  treatments and potential barriers to compliance
  discuss how to seek help, use of tools
• Sexual health Discuss puberty changes,
  difference with disability how to get
  information
• Social support Opportunity for parents to
  discuss concerns about the future discuss peer
  involvement, supportive relationships with youth
• Education/vocation planning Discuss home
  responsibilities, restrictions in activities due
  to disability
• Health/lifestyle Question risky behaviors,
  impact on health

Transition Services, British Columbia Childrens
Hospital www.youthhealth.ca
16
Transition Planning ChecklistMiddle stage -
13-15 years / Grade 8-10

• Self advocacy Discuss strategies to access info
• Independent health care behaviors Youth makes
  appointment, arranges transport practice filling
  Rx discuss seeking emergency care
• Sexual health Request youth question impact on
  condition encourage youth parents discussing
  concerns
• Social support Request positive goals for self,
  health
• Education/vocation planning Discuss plans for
  HS, career support discussions with school
  counselor re career prep, volunteerism
• Health/lifestyle Discuss driving and limits,
  body image and exercise/diet

Transition Services, British Columbia Childrens
Hospital www.youthhealth.ca
17
Transition Planning ChecklistLate stage - 16-18
years / Grade 11-12

• Self advocacy Discuss and assist in choosing
  adult care practitioner
• Independent health care behaviors Maintains
  personal health record meets with potential PCP
• Sexual health Discuss details of sexuality and
  function
• Social support Identify personal assistance
  needs, plan for life away from family
• Education/vocation planning Discuss higher
  education and employment options, health care
  benefits, living arrangements, health ipact
• Health/lifestyle Offer opportunity to discuss
  depression, identify plan to get help

Transition Services, British Columbia Childrens
Hospital www.youthhealth.ca
18
CASE STUDY

• 17 year old young women with dystonic cerebral
  palsy, generally in good health, has had periodic
  medical issues. Plan is for transfer of care to
  internist.
• Past medical history synopsis, review of
  systems, secondary and aging conditions, index of
  suspicion
• Functional level motor, sensory, cognition,
  adaptations/equipment
• Prevention activities womens health, exercise

19
CASE STUDY

• Discussion Topics
• Preparation for transition
• Receiving a patient in transition
• Expectations of health care needs and functional
  outcome
• Secondary conditions
• Aging with a disability

20
SUMMARY

• Identify clinician to bridge child ? adult care
• Require consumer participation - understand
  personal control and individual values
• Raise the index of suspicion for recognition,
  diagnosis, and treatment anticipatory care
• Recognize individual strengths support
  residence/employment options within skill sets