Disability in Indian Country - NCAI · system conscious or unconscious bias Disability disparities – quality of rehabilitation service • Do Natives have equal rehabilitation experiences?

Molly Fuentes, MD Department of Rehabilitation Medicine

Disability in Indian Country: A proposal to use the ICF and a Disability

Disparity Model to Highlight the Needs of

American Indian Children

June 27, 2016 NCAI Data Partners Conference

Spokane, WA

Objectives

1. Describe the International Classification of Function,

Disability and Health (ICF)

2. Identify potential sources of disparity in disability for

Native Americans with TBI

3. Discuss methods for upcoming research project

Outline

• Introduction

• What is Rehabilitation Medicine?

• The ICF

• Disability Disparities Model

• Project in development

About me

• Member of the Confederated Tribes of Warm

Springs

About me

• Goal of being a physician since the age of 4

• April 27, 1996

• Sister with C1 spinal cord injury

• Inpatient rehabilitation for two months

• Personal exposure to many fields of

medicine

Physical Medicine and Rehabilitation

• Nerve, muscle, bone and brain experts who

treats injury or illness to restore function as

part of a multidisciplinary team

• Approach considers the whole person and

not just one disease or organ system

• Develop a comprehensive program for

helping a person and their family put the

pieces of their life back together after injury

or illness

http://www.cordynamics.com/blog/index.php/preclinical-services-published-in-british-journal-of-pharmacology

Outline

• Introduction


• (and what is a physiatrist’s role in TBI?)

• The ICF



The International Classification of Functioning,

Disability, and Health (ICF)

• Biopsychosocial Model

• Classification system

• Conceptual Framework

• Disability is social

construct

• Interaction between

many dimensions of a

person and his or her

environment

• Paralysis

• Insensate skin

• Bowel and bladder changes

• Low blood pressure

• Temperature dysregulation



Body function and structures – Spinal Cord Injury

Persons with Spinal Cord Injury may have differences in

• Mobility

• Dressing

• Toileting

Capacity – level of activity in ideal setting

Performance – level of activity in person’s environment (WHO 2002)

Activity level mediates participation in children with CP (Bjornson 2013)



Activity – the execution of a task or action

What does that mean? A “set of organized activities directed toward a

personally or socially meaningful goal” (Coster and

Khetani 2008)

The construct will vary between individuals and among

cultures (Stevelink 2013, Pichette 1999)

Participation contributes to quality of life and is

the end goal of rehabilitation programs. (Dahan-Oliel

2012, Coster 2012)



Participation – “involvement in a life situation”

Personal Factors – background of

a person’s life and living Age, gender, educational background,

employment history, socioeconomic

status

Choices and goals



Context – Personal and Environmental Factors

Environmental Factors – physical, social, attitudinal

environment in which people live and conduct their lives Rural – Urban

Built environment (paved roads, sidewalks, ramps)

Support system (family, community)

Social norms around function and roles

Institutions (health care, law, etc)

The ICF and Native Americans

My hypotheses

• No specificity for American

Indians at the Body Functions &

Structure or Activity level

• Unique American Indian

experience of disability within the

areas of Participation, Personal

and Environmental Factors

• Culturally-mediated nuances

• Social Determinants of Health

Outline

• Introduction


• (and what is a physiatrist’s role in TBI?)

• The ICF



“A differential experience based primarily on cultural orientation that results in higher incidence of disability, and/or lower participation levels in the formal helping system, and/or fewer successful individual outcomes when compared to majority culture groups”

Disability Disparities

Allen Lewis, Disability disparities: A beginning model. Disability and Rehabilitation, 2009; 31(14): 1136-1143

Disability Disparities

Allen Lewis, Disability disparities: A beginning model. Disability and Rehabilitation, 2009; 31(14): 1136-1143

Disability disparities – Is there a higher incidence of

disability among AI/ANs?

Cultural traditions, biogenetics, response to oppression

Factors accounting for higher incidence

-Genetic factors

-Lifestyle, behavior choices

Prevalence of disability among non-

institutionalized working-age people (21-64)

Erickson et al. 2010

Disability Status

Report United

States.

Disability disparities – incidence

Cultural traditions, biogenetics, response to oppression

Factors accounting for higher incidence

-Genetic factors

-Lifestyle, behavior choices

Current Project

• Northwest Portland Area Indian Health

Board / Portland Area IHS

• Identifying records with diagnostic codes

associated with disability in children

• Prevalence of disability among AI/AN children in

Portland Area (WA/OR/ID)

• Etiology of disability (traumatic, congenital, etc.)

• Type of disability (physical, cognitive, etc.)

• Diagnoses (Cerebral Palsy, brain injury, etc)

Disability disparities – worldview

• Are there differences between the Native

and Western worldview about disability?

• What are the intertribal differences in

perspective on disability

• Do Natives believe Western rehabilitation

services are beneficial?

Differences in worldview,

values

Group perspective on disability

Group view of:

-Etiology -Progression

-Effective Intervention

Disability disparities – service access

• Are there differences in access to inpatient

rehabilitation services for Natives?


values

Access to services,

Utilization

-Role of SES - Group’s

help-seeking tradition -Complex

system entry

Disability disparities – service access

• Are there differences in access to inpatient

rehabilitation services for Natives?

• Proposed barriers to accessing

rehabilitation services

• Availability

• Transportation

• Other contextual factors? (link to the ICF)


values

Access to services,

Utilization

-Role of SES - Group’s

help-seeking tradition -Complex

system entry

Practitioner or service system conscious or

unconscious bias

Disability disparities – quality of rehabilitation service

• Do Natives have equal rehabilitation

experiences?

Nature and quality of

service experience

-Treatment alliance -Cultural

expectations -Service quantity, quality


unconscious bias

Disability disparities – quality of rehabilitation service

• Do Natives have equal rehabilitation

experiences?

• Among children who had loss of

consciousness >24 hours after TBI, Native

children had less improvement in motor

function during inpatient rehabilitation

Nature and quality of

service experience

-Treatment alliance -Cultural

expectations -Service quantity, quality


unconscious bias

Disability disparities – outcome measures

• To my knowledge, there are not outcome

measures related to disability or

rehabilitation outcomes that have been

specifically validated with Natives

• Importance of eliciting patient and family

goals, understanding the context of a

family

Impact of services on individual outcome

Outcomes: -Aligned with

culture -Appropriate

measures

Etuaptmumk – Two-Eyed Seeing

• Formally shared by Mi’kmaw elders in 2004

• “Learning to see from one eye with the

strengths of Indigenous knowledges and

ways of knowing, and from the other eye with

the strengths of Western knowledges and

ways of knowing ... and learning to use both

these eyes together, for the benefit of all” Two-Eyed Seeing. Institute for Integrative Science & Health, Cape Breton University.

http://www.integrativescience.ca/Principles/TwoEyedSeeing/

Etuaptmumk – Two-Eyed Seeing

• “Requires a “weaving back and forth"

between knowledges, and this will draw

upon abilities to meaningfully and

respectfully engage in an informed manner

in collaborative settings”

• Co-learning

• Reciprocity – learning from each other

• Collectivity – learning together

• Creativity – seeing linkages between knowledges

• Weaving capacity – going between the cultures’

actions, values, knowledges

Two-Eyed Seeing. Institute for Integrative Science & Health, Cape Breton

University. http://www.integrativescience.ca/Principles/TwoEyedSeeing/

Co-Learning. http://www.integrativescience.ca/Themes/Colearning/



Next steps - Understanding the Experience and Priorities

of AI/AN Children with Disabilities and Their Families

• In-depth interviews

• AI/AN youth (age 11-24) with disabilities

• Parents/caregivers of AI/AN children/youth (birth to 24) with

disability

• Washington, Oregon, Idaho

• Questions to elicit experience of health, activity,

participation, health/rehabilitation service utilization,

intersection with culture

• Framework analysis using ICF and disability disparities model

• Identify priorities of consumers/communities in order to

develop culturally-relevant interventions

Next steps

Challenges

• Relatively low incidence

(but high impact on

family and community)

• Intertribal differences

• Eliciting perspectives of

people who do not utilize

tertiary care centers

Proposed Solutions

• Recruit from multiple

communities

• Work with communities

from similar cultural

groups

• Recruit at community

level, not just from rehab

hospital

Questions or Suggestions?

References

1. Beaudin, PG. A Contemporary Socio-cultural Exploration of Health and Healing: Perspectives from members of the Oneida Nation of the Thames

(Onyota'a;ka). London, Ontario, Canada: Rehabilitation Sciences, University of Western Ontario; 2010.

2. Bjornson KF, Zhou C, Stevenson RD, Christakis D. Relation of stride activity and participation in mobility-based life habits among children with cerebral

palsy. Arch Phys Med Rehabil. 2014;95(2):360-368.

3. Bjornson KF, Zhou C, Stevenson R, Christakis DA. Capacity to participation in cerebral palsy: evidence of an indirect path via performance. Arch Phys Med

Rehabil. 2013;94(12):2365-2372.

4. Coster W, Khetani MA. Measuring participation of children with disabilities: issues and challenges. Disabil Rehabil. 2008;30(8):639-648.

5. Coster W, Law M, Bedell G, Khetani M, Cousins M, Teplicky R. Development of the participation and environment measure for children and youth:

conceptual basis. Disability and rehabilitation. 2012;34(3):238.

6. Dahan-Oliel N, Shikako-Thomas K, Majnemer A. Quality of life and leisure participation in children with neurodevelopmental disabilities: a thematic analysis

of the literature. Qual Life Res. 2012;21(3):427-439.

7. Gonzalez, KR. Perceived Medical Discrimination in American Indian Women: Effect on Health Care Decisions, Cancer Screening, Diabetes Services and

Diabetes Management. Dissertation 3/16/2010.

8. Hausmann LR, Myaskovsky L, Niyonkuru C, et al. Examining implicit bias of physicians who care for individuals with spinal cord injury: A pilot study and

future directions. J Spinal Cord Med. 2015;38(1):102-110.

9. Lewis A. Disability disparities: a beginning model. Disabil Rehabil. 2009;31(14):1136-1143.

10. Pichette EF, Garrett MT. Cultural Identification of Amercian Indians and It's Impact on Rehabilitation Services. Journal of Rehabilitation. 1999;65(3):3-10.

11. Stevelink SAM, Van Brakel WH. The cross-cultural equivalence of participation instruments: A systematic review. Disability and Rehabilitation.

2013;35(15):1256-1268.

12. Thiede Call K, McAlpine DD, Johnson PJ, Beebe TJ, McRae JA, Song Y. Barriers to care among American Indians in public health care programs. Med

Care. 2006;44(6):595-600.

13. World Health Organization. Towards a Common Language For Functioning, Disability and Health. Geneva2002.

Documents

Disability in Indian Country - NCAI · system conscious or unconscious bias Disability disparities – quality of rehabilitation service • Do Natives have equal rehabilitation experiences?