OBJECTIVES - Georgetown University

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DELVING DEEPER:DISPARITIES IN DEVELOPMENTAL DISABILITIES SERVICES AND SUPPORTS

Tawara D. Goode & Vivian Jackson

May 11, 2017

OBJECTIVESParticipants will:

1. Examine concepts and definitions of disparity, equity, and inequity from the extant literature and their implications for systems serving individuals with developmental and other disabilities and their families.

2. Apply a framework to analyze disparities experienced by individuals with developmental and other disabilities that uses the lens of availability, accessibility, acceptability, quality, and utilization of services and supports.

3. List at least five contributing factors to disparities experienced by individuals with developmental and other disabilities from underserved and unserved groups and explore the applicability to their respective state, territory, or jurisdiction.

4. Describe seven approaches to address disparities that affect individuals with developmental and other disabilities.

5. Reflect on the role of leadership in addressing disparities impacting individuals with developmental and other disabilities and their families.

Slide Source:© 2017 - Georgetown University National Center for Cultural Competence

http://nccc.georgetown.edu/leadership/index.html

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Health Related Activities

Transportation

Education & Early

Intervention

Employment Related

Activities

Recreation Related

Activities

Child Care

Housing


Mandates from the DD ACTfor

UCEDDsP&As

DD Councils

Advocacy

Capacity Building

Systems Change

Developing a Targeted Disparity Goal or Objective

The starting point for developing a targeted disparity goal or objective is with the analysis of the barriers to full participation of unserved and underserved groups of individuals with developmental disabilities and their families (Section III of the Comprehensive Review and Analysis (Part (C) (ii)). Based on the findings of the analysis, the DD Council should develop the goal or objective and include the identified subpopulation; the identified disparity the DD Council is trying to decrease, and; identify the strategy the DD Council will use to reduce the disparity.

GUIDANCE FOR DD COUNCILS FIVE-YEAR STATE PLAN

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UNSERVED AND UNDERSERVEDThe term “unserved and underserved” includes populations such as individuals from racial and ethnic minority backgrounds, disadvantaged individuals, individuals with limited English proficiency, individuals from underserved geographic areas (rural or urban), and specific groups of individuals within the population of individuals with developmental disabilities, including individuals who require assistive technology in order to participate in and contribute to community life.

Data source: retrieved on 5/9/17 from https://acl.gov/Programs/AIDD/DDA_BOR_ACT_2000/p2_tI_subtitleA.aspx

The Developmental Disabilities Assistance and Bill of Rights Act of 2000

Public Law 106–402 106th Congress

Slide Source:© 2017 Georgetown University National Center for Cultural Competence

What is a disparity?

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Difference Not equal Lack of similarity

Disparities in and of themselves can be neutral, neither good nor bad, just a descriptive difference.

Disparity in height


DEFINING DISPARITY


Concepts and

Definitions from

the Health Care

Literature

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HEALTH DISPARITIES ARE THE PRODUCT OF HEALTH INEQUITY


A health disparity is defined as a particular type of health difference that is closely linked with social or economic disadvantage – that is people who have experienced obstacles based on their:

race or ethnicity religion gender sexual orientation or

gender identity geographic location or

“place”

mental health socioeconomic status cognitive, sensory or

physical disability other characteristics

linked to discrimination or exclusion

Carter-Pokras O, Baquet C. What is a "health disparity"? Public Health Rep. September-October 2002;117(5):426-434.

U.S. Department of Health and Human Services. The Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020. Phase I report: Recommendations for the framework and format of Healthy People 2020. Section IV. Advisory Committee findings and recommendations. Available at: http://www.healthypeople.gov/hp2020/advisory/PhaseI/sec4.htm#_Toc211942917. Accessed 3/22/17.

Disparities in health care are differences in the quality of treatment, care, and services given to one group, when compared to another group, even though there are no differences between these group in:

insurance access to care needs and preferences

These difference in care cannot be explained by the disease, illness, or health status of the patient.

Smedley BD, Stith AY, Nelson, AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care .Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Board on Health Sciences Policy, Institute of Medicine. Washington, DC: National Academies Press; 2003:19.

Balsa A, McGuire TG. Prejudice, clinical uncertainty and stereotyping as sources of health disparities. J Health Econ.2003;22:89-116.

US Department of Health and Human Services. The Secretary’s Advisory Committee on National Health Promotion and Disease Prevention. Objectives for 2020. phase I report: recommendations for the framework and format of Healthy People 2020. section IV. Advisory Committee findings and recommendations. Available at: http://www.healthypeople.gov/hp2020/advisory/PhaseI/sec4.htm#_Toc211942917. Accessed February 21, 2014


DEFINING DISPARITIES IN HEALTH CARE

http://www.healthypeople.gov/hp2020/advisory/PhaseI/sec4.htm#_Toc211942917

http://www.healthypeople.gov/hp2020/advisory/PhaseI/sec4.htm

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INEQUITIES IN HEALTH DEFINED

Inequities in health systematically put

groups of people who are already

socially disadvantaged (for example, by

virtue of being poor, female, and/or

members of a disenfranchised racial,

ethnic, or religious group) at further

disadvantage with respect to their

health.

Source: Braveman, P. & Gruskin. Defining equity in health. J Epidemiol Community Health 2003;57:254-258. retrieved on

9/7/16 from http://jech.bmj.com/content/57/4/254.full.pdf+html


EQUITY IN HEALTH DEFINED

“Equity in health can be defined as the absence of

systematic disparities in health (or in the major social

determinants of health) between social groups who

have different levels of underlying social

advantage/disadvantage—that is, different positions in

a social hierarchy.”

“Health is essential to well-being and to overcoming

other effects of social disadvantage.”

Source: Braveman, P. & Gruskin. Defining equity in health. J Epidemiol Community Health 2003;57:254-258. retrieved on

9/7/16 from http://jech.bmj.com/content/57/4/254.full.pdf+html

http://jech.bmj.com/content/57/4/254.full.pdf+html

http://jech.bmj.com/content/57/4/254.full.pdf+html

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Disparities experienced by individuals

Actions to mitigate disparities and achieve equity

Total System Transformation!

Image source: https://ehhsdean.com/tag/equity/

How do these definitions and frameworks apply to disparities

experienced by underserved and unserved groups in your

State or Territory?


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Disparities in what?

HEALTH & BEHAVIORAL HEALTH OUTCOMES AND STATUS

(children, families, communities, populations)

CARE SERVICES SUPPORTS

AVAILABILITY ACCESSIBILITY ACCEPTABILITY UTILIZATION

HEALTH & BEHAVIORAL HEALTH

POLICY & RESOURCES

(public & private sectors)

Slide Source:© 2011 - National Center for Cultural Competence

Health & Behavioral Health Disparities Framework


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Health Care Disparities: Health Care Policy, Resources, Accessibility, and Health Outcomes

THE TRAGIC CONSEQUENCES FOR DEMONTE DRIVER

Demonte’s mother could not find a dentist that would accept Medicaid insurance. In the time she was seeking care, Demonte’s abscess spread to his brain.

Heroic efforts were made to save Demonte, including two operations

and 8 weeks of additional care and

therapy totaling about $250,000.

But it was all too late. Demonte died on February 25, 2007 -- when his life could have been saved by a routine dental visit and an $80 tooth extraction.

SERVICES & SUPPORTS

AVAILABILITY ACCESSIBILITY ACCEPTABILITY UTILIZATION


A Developmental Disabilities Disparities Framework


QUALITY

FULL PARTICIPATION OF INDIVIDUALS WITH DEVELOPMENTAL AND OTHER DISABILITIESin all facets of community life

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Health □ yes □ no □ don’t know Transportation □ yes □ no □ don’t know Education & Early Intervention □ yes □ no □ don’t know Employment □ yes □ no □ don’t know Recreation □ yes □ no □ don’t know Child care □ yes □ no □ don’t know Housing □ yes □ no □ don’t know


Polling Question

Do you know the disparities experienced by underserved and underserved groups in your state/territory in the following areas mandated by the DD Act?


Why do we have disparities in our DD systems of services

and supports for individuals with

developmental and other disabilities?

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The “ISMs” is an umbrella term used to refer to a range of attitudes and behaviors that involve perceived superiority, oppression, prejudice, and discrimination based on such factors as race, national origin, ethnicity, language, class, disability, sexual orientation, and gender identity and expression.



Selected CONTRIBUTING FACTORS

Individual and family factors Culturally-defined beliefs and practices about

developmental disabilities Lack of knowledge about services and supports

… do we have disparities in our

systems of services and supports for

individuals with developmental

and other disabilities?

System-related factors ISMs Public Policy and Resources Social determinants

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Discussion

What do you see as the role of three AIDD-funded programs in addressing the disparities in your State/Territory?

Advocacy

Capacity Building

Systems Change


Things to Consider in Addressing Disparities

Sharing ownership

Actively engaging underserved and underserved populations in solutions

Confronting the ISMs at individual and systemic levels

Collecting & analyzing data

Employing culturally and linguistically competent polices and practices

Advocating for changes in policy and resource allocation

Nurturing and supporting leadership

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Organizational Change Theories Applied to the Role of Cultural & Linguistic Competence in Addressing Disparities

Resistance is a characteristic of any major organizational change effort and a major reason why organizational change efforts fail. (Prochaska, Prochaska and Levesque, 2001).

Resistance should be expected in different stages of multicultural organizational change because the topics of prejudice, discrimination and oppression are controversial and emotionally charged. (Brantley, Frost and Razak, 1996).

The Transtheoretical Model of Change suggests that it is counterproductive to forge ahead with action without addressing issues such as resistance, that stand in the way of individual and organizational readiness for change.

Data Source:Mayeno, L. Multicultural Organizational Development: A Resource for Health Equity, in Cultural Competence in Health Care Series, The California Endowment and Compasspoint Nonprofit Services, April 2007.


Cultural competence and linguistic competence are neither the panacea nor

cure for disparities in developmental disabilities services and supports –they are only part of the solution.


Thoughts about the Role of Cultural and Linguistic Competence

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Reflecting on the Role of Leaders

Leaders use power in alignment with the values & principles of cultural and linguistic competence. A leader is cognizant of the power and influence he/she possesses, exercises that power

wisely and respectfully, and uses it to achieve organizational goals for cultural and linguistic competence.

Leaders are champions. A leader must be vocal, visible, energetic proponent of the changes that need to be made.

Leaders are advocates. A leader must be an advocate on behalf of and in partnership with excluded or underserved groups.

Leaders facilitate conflict resolution. A leader recognizes and effectively addresses inherent conflicts between and among diverse cultural groups.

Goode, T., & Jackson, V. H. unpublished manuscript


Reflecting on the Role of Leaders

Leaders persevere. A leader can “stand in the fire of resistance” that is ever present when challenging the “isms”

at the individual, institutional, and community levels.

Leaders facilitate learning. A leader assures processes to: (1) learn about conceptual frameworks of cultural and linguistic competence and their value for the organization, and (2) acquire cultural knowledge of the children, youth and families receiving services and the communities in which they live.

Leaders serve as role model, coach & mentor. A leader “walks the talk” and supports others to do the same in an authentic and compelling

manner.

Leaders plan for leadership succession. A leader accepts that the work to advance and sustain cultural and linguistic competence is a continuous process, therefore prepares others for leadership roles.

Goode, T., & Jackson, V. H. unpublished manuscript

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*Adapted from: Brown C. & Mazza, G. (2005). Leading Diverse Communities: A How-To Guide for Moving from Healing into Action. National Coalition Building Institute. Jossey-Bass: San Francisco, CA.

Effective leadership for cultural and

linguistic competence requires having the

integrity to take principled stands.*

Leadership for addressing disparities requires (re)claiming courage.*

CLOSING THOUGHTS


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