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Nicole Perry, LCSW, ACHP-SW
&
Lynn Skubiszewski, LCSW, ACHP-SW
Conflict of Interest Statement
The presenters have disclosed that they are presenting this material without bias or conflict of interest.
Objectives Define underserved and special populations and articulate the
professional Social Work mission and ethical duty to serve these populations.
Specify at least three details about a marginalized/special
population group and describe how this may or may not change/influence your agency service delivery strategy.
Identify techniques that your agency can use to partner with
other agencies, community resources, grant opportunities, or public servants to get various special populations’ needs met.
Outline what quality services and best practices might look like
for care of special population needs on both Micro and Macro level of policy and program development.
Current State of
Social Services:
Drought
Can attendees give examples of program or entire agency closures?
Wine cellar getting barren?
Defining Disenfranchised and Underserved
Disenfranchised – deprived of a right, privilege or immunity
Underserved – inadequate services or facilities being offered
Marginalized – regulated to an unimportant or powerless position in groups or society
Merriam Webster (Accessed 2015)
NASW Code of Ethics Ethical Principles
Service
Social Justice
Ethical Standards
1.05 Cultural Competence and Social Diversity
Social Work Values Service Social justice Dignity and worth of the person Importance of human relationships Integrity Competence
NASW Standards for
Cultural Competence NASW supports and encourages the development of
standards for culturally competent social work place…and the advancement of practice models that have relevance for the range of needs and services represented by diverse populations.
Competence = The process by which individuals and systems respond respectfully and effectively to people of all cultures, languages, classes, races, ethnic backgrounds, religions and other diversity factors in a manner that recognizes, affirms and values the worth of individuals, families and communities and protects and preserves the dignity of each.
Disenfranchised Groups
African American
Developmentally Delayed
African Americans/Black 42 million African Americans (2010 Census)
13.6 percent (2010 Census)
Encounter structural, institutional and interpersonal biases
¼ of Blacks live below the poverty line
Racism continues to drive marginalization evidenced in the
Criminal justice, housing and education systems
In healthcare, Blacks are likely than whites to experience poor pain management, poor provider communication, and lower satisfaction with end of life care
Riphagen, L. Marginalization of African-Americans in the Social Sphere of US Society: Interdisciplinary Journal of International Studies , 2008
Developmentally
Delayed/Intellectual Disabilities Intellectual Disabilities: Intellectual disability is a
disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18. (American Association of Intellectual and Developmental Disabilities)
Autism, Low IQ, Epilepsy and Cerebral Palsy Ward, Nichols, Freedman: Uncovering Health Care Inequalities….NASW
Develop e tal Disa ilities, o t’d. 1 in 6 children have developmental disabilities
(Centers for Disease Control and Prevention)
Down Syndrome
Those born addicted to alcohol or other substance
Hearing Loss & Vision Impairment
Illinois Council on Developmental Disabilities (ICDD)
Greater risk for trauma, victimization, and gaps in equal opportunity
Pursley, RN, Supporting People with I/DD : Spring 2014 APS Healthcare
newsletter
Hospice Care Access Barriers In community residential settings for adults with
developmental disabilities
Lack of diversity in staff and promotional materials
So many regulations and data collection expectations agencies lack resources and energy to explore ways to draw in Special Needs groups
Primary Care Provider lack of knowledge of I/DD
VanderWielen et al, Health disparities and underserved populations: a….; Medical
Education On Line 2015
African American/Black American They take your money
Your loved ones don’t see you anymore
Root of resistance is the toxic distrust of the health care system
Economic barriers persist
Access to care difficult due to lack of primary providers
Varney, S. (2015)
I/DD Access Barriers Primary caregiver is often aged and has been
sheltering person all their lives.
The training of these parents is hampered by poverty, low maternal education, single parent households and minority status
Unstable housing and lack of low income housing
Lack of medical primary care prowess in I/DD which causes fewer referrals for developmental support
Underfunded special ed programs especially in low income and rural areas
Lack of Vocational Rehab centers due to low funding American Foundation for the Blind (2015)
Defining Health Care and
Hospice Access Barriers Financial
Structural
Cognitive
Understanding Mechanisms of Mental Health Care Disparities – ongoing research studies funded thru grant conducted by Center for Multicultural Mental Health Research
Carrillo, et. al. (2011) & Devoe, et al (2007)
Watered-Down Services
Lack of focus on infrastructure – other focuses Financial Constraints
Regulatory Changes – CR 8358, ICD 10 Implementation, Hospice
Payment Changes
Reduced awareness of watering down=we don’t know what we don’t know
Cultural competency involves a commitment and dedicated efforts to support staff towards this goal
Cultural focus – as a nation have become very self-focused
Webb (2012)
Why Is This a Problem?
Lack of special populations groups advocating/serving reduces access resulting in hopelessness
Reduced best evidence based practices
Less effective responses to specific needs
Community lacks the richness of diversity
When a family member cannot work due to care responsibilities fewer $ are pumped in the economy and employers lose valuable productivity
Higher stress levels cause increased need for police and ED
EOL Agencies Value Micro/Macro Advance
directives
Grief Support
Save Healthcare
$$
Relieve Suffering
Advance EOL
Education
Health care Jobs
Partnerships, Grants and Loans
Private business donations and program collaboration: Sage Products partners on Sage Cancer Center for Centegra (local hospital)
Aurora University partners with Pioneer Center to offer MSW classes
Palliative and hospice idea for our agency: APN trained in Developmental Delays to partner our services for this population in McHenry County at Pioneer Center
Partnerships: AARP to develop more widespread education and awareness of
palliative and end of life care
Pepper Construction: Donation for inpatient center for hospice care
Local hospital systems
Advocacy Lobbying, Questioning, participation in a vision: when systems are not responding to people’s needs…
START AN ADVOCACY GROUP TO SUPPORT YOUR MISSION!
Business advocacy Political advocacy Examples: National Organization Support – NAMI NASW PTA American Medical Association SWHPN
Thanks for attending! Nicole Perry, LCSW, ACHP-SW Hospice Team Manager JourneyCare Nicole is a graduate of the UW-Madison School of Social Work. She worked in long term care prior to joining JourneyCare in 2011. Nicole has worked with the adult field teams, pediatrics and inpatient units at JourneyCare. Nicole has presented at local, state, and regional conferences on topics such as self care, boundaries, managing expectations, and cultural competency in end of life care. [email protected]
Lynn Skubiszewski, LCSW, ACHP-SW Palliative Care JourneyCare Lynn is a graduate of Aurora University School of Social Work and has worked in the academic, geriatric, non-profit and healthcare fields for over 20 years. Lynn is a national speaker on Palliative issues. She has an interest in coaching the helping professionals in self care and promoting palliative care. Lynn encourages social workers in healthcare settings to embrace leadership roles, research, and writing in their multidisciplinary settings. [email protected]
References 2010 Census Brief. The Black Population 2010. Drewery, Jr., Malcolm, Hoeffel, Elizabeth, Johnson, Tallese, and Rastogi, Sonya. Aksim-Lovseth & Aldana. Looking beyond affordable health care – cultural understanding and sensitivity-necessities in addressing healthcare disparities of the US Hispanic population. Health Mark Q. (2010), 27(4), 354-387.
American Association on Intellectual and Developmental Disabilities. http://aaidd.org/ American Foundation for the Blind. http://www.afb.org/default.aspx
Centers for Disease Control and Prevention. Facts about developmental disabilities. http://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
Refere es o t’d. Devoe JE, Baez, A., Angier, H., et al. Insurance + access not equal to health care: typology of barriers to health care access for low-income families. Ann Fam Med. 2007. Nov –Dec (6) 511-8. Human Service Works. www.humanservicesworks.org. LeRoux, K.M. (2004). Nonprofit Entrepreneurship: Organizational Responses to Budget Cuts Among Social Service Providers. Dissertation Abstract. Merriam-Webster Online Dictionary, accessed August 30, 2015
National Alliance on Mental Illness, March 2013. Reviewed by Ken Duckworth MD. Mental Illness Facts and Numbers. NASW Code of Ethics. http://www.socialworkers.org/pubs/code/code.asp
Refere es o t’d. Pardisani, M. & Sackman, B. New York City Senior Centers: A Unique, Grassroots, Collaborative Advocacy Effort. Activities, Adaptation and Aging. (2014), 38, 200-219. Pursley, R.N. (Spring 2014). Supporting People with Developmental Disabilities. APS Healthcare Newsletter
Rafter, K.M. (2008). Community Access to Nonprofit Social Services. Dissertation Abstracts. Riphagen, L. (2008). Marginalization of African Americans in the Social Sphere of US Society. The Interdisciplinary Journal of International Studies. Social Policy: Overview. Encyclopedia of Social Work (2013) US Department of HHS – Obesity website US Dept. Health and Social Services 2010
Refere es o t’d
VanderWielen, L.M., Vanderbilt, A.A., Crossman, S.H., Mayer, S.D., Enurah, A.S., Gordon, S.S. & Bradner, M.K. Health disparities and underserved populations: a potential solution, medical school partnerships with free clinics to improve curriculum. Medical Education Online. (April 2015). Varney, S. (August 2015). A Racial Gap in Attitudes Toward Hospice Care. New York Times.
V.V.B. (August 2015). A stalemate with the governor. The Economist. http://www.economist.com/node/21660770/print Wacker, R. R. & Robert, K.A. (2008). Community resources for older adults: Programs and services in an era of change (3rd ed.). Thousand Oaks, CA: Sage. Ward, R.L., Nichols, A.D., & Freedman, R. Uncovering Health Care Inequalities among Adults with Intellectual and Developmental Disabilities. Health and Social Work. (2010), 35(4), 280-290. Wilson, C. (2015). Illinois Poverty on Rise since 2010: Four Counties at Greatest Risk Says Report. http://www.rebootillinois.com/2015/02/12/editors-picks/caitlinwilson/illinois-poverty-rise-since-2010-four-counties-greatest-risk-says-report/33062/
Websites you can use! Center for Multicultural Mental Health Research -
http://www.multiculturalmentalhealth.org/ Commonwealth Fund – Health Policy, Health Care Reform
- http://www.commonwealthfund.org/ National Institute of Health – Grants, Funding
www.nih.gov Pew Research Center – Nonpartisan fact tank -
http://www.pewresearch.org/ Rand Center for Population Health and Health Disparities
- http://www.rand.org/health/centers/pophealth.html Robert Wood Johnson Foundation – Removing Barriers to
Better Health - http://www.rwjf.org/
