health & healthcare for people with idd...health disparities among adults with developmental...
TRANSCRIPT
Health & Healthcare for People with IDD:A Practical Approach to Achieving Optimal Health
David A. Ervin, BSc, MA, FAAIDD
Jewish Foundation for Group Homes
LEARNING OBJECTIVES
1. Participants will be able to identify social determinants of health that are
uniquely experienced by people with IDD, as well as their health status ‘starting
point.’
2. Participants will be able to describe a range of aspects of a culturally accessible
primary care delivery system, including integration of primary care with
additional systems of care.
3. Participants will be able to identify measures and metrics used to assess efficacy
of care and health status changes.
Focus on health/healthcare that is designed with and to provide
culturally competent care to people with IDD
BARRIERS
CONTEXT
www.hcardd.ca
5
Cost of healthcare for Americans with IDD
$4.24 billion (39% medications!)
CONTEXT
Poorer health status
Poorer health outcomes
Sources: Ervin & Hennan, 2016; Anderson, et al., 2013; Special Olympics, 2017
THE “SYSTEM”
• People with IDD more likely to report unmet needs in healthcare, mental health, prescription medications, and dental care
• Lower cost prevention replaced by high-cost emergency or acute care
• Finding providers who understand and can provide culturally sensitive healthcare is difficult
• Specialty care even more difficult
• When care is available, it is provided by healthcare providers who have no formal training
• Care is not integrated and is not customized to people with IDD
THE RESULT OF THE “SYSTEM”
People with disabilities are
• More likely to report poor health status
(Reichard, Stolzle, & Fox, 2011; Scott & Havercamp, 2015)
• At greater risk for chronic diseases such as cardiovascular
disease and obesity
(Gulley, Rasch, & Chan, 2011)
• More likely to smoke, have poor diet, and be inactive
(Havercamp, Scandlin, & Roth, 2004; McCoy, Jakicic, & Gibbs, 2016)
THE (INEVITABLE) PROBLEM
*cohort= 65,000; 6 Year Period (FY 2010-2015)
THE (INEVITABLE) RESULT
NATIONAL GOALS: HEALTH & WELLNESS
Source: http://aaidd.org/news-policy/policy/national-goals-2015
Surgeon General’s reports (2002, 2005), Institute of Medicine Report (2007), the
National Council on Disability Report (2009), and the WHO World Report on
Disability (2011) recommended several key actions to improve the health of people
with disabilities (Krahn, 2012)
1. Improve public recognition that people with disabilities can live long, healthy and productive lives and
reduce stigma and discrimination;
2. Improve knowledge, skills and attitudes of healthcare providers to improve care;
3. Improve accessibility of healthcare, including insurance, facilities, equipment, transportation;
4. Improve opportunities for health promotion, safety and wellbeing;
5. Improve data on disability populations, and research on disability-related health disparities and
interventions.
SOLUTIONS
Source: Sullivan, et al., 2018
BEST PRACTICE: 2018 CANADIAN CONSENSUS GUIDELINES
1. Involve people with disabilities in all aspects of health promotion and health care
2. Training for health professionals, people with disabilities and their families in healthcare needs,
rights, and best practices including developing a repository of training available
3. Increase access to quality healthcare and health promotion
4. Develop, research, and scale up evidence-based programs that result in positive health outcomes
for people with disabilities
5. Identify and develop valid, reliable, practical and sensitive instruments to measure outcomes
relevant to persons, systems, and provider
6. Improve communication, planning, and support in transitions -transitions are a dangerous time
7. Identify & analyze data sources to better understand definitions of disability, service needs and use,
social determinants of health and healthcare disparities, health care experiences, and health
outcomes
Source: Ailey, et al., 2017
BEST PRACTICE: PATH
BEST PRACTICE
National Curriculum Initiative in Developmental Medicine (NCIDM)
BEST PRACTICE
http://iddtoolkit.vkcsites.org/
BEST PRACTICE
BEST PRACTICE
H-CARDD is a research partnership to
improve the health of Ontarians with
developmental disabilities.
BEST PRACTICE
BEST PRACTICE
Source: https://ddprimarycare.surreyplace.ca/
https://healthcare.utah.edu/uni/programs/ho
me/
https://www.wihd.org/programs-
services/adult-health-services/
https://www.pchc.org/
https://achievable.org/
EMERGING MODELS
https://leespecialtyclinic.com/
https://www.peakvista.org/locations/ddhc
https://www.yai.org/locations/healthcare
http://www.seethingsmyway.org/
EMERGING MODELS
EMERGING MODELS
Specialty Primary Care Collaborative
Primary Healthcare Service Delivery Clinic
IDD Health Promotion Center
System Components
Health Promotion
Integrated Beh./Mental Health
Health Education Programs
Clearinghouse & Resource Library
Planning, Consultation and Counseling
School to Adult Transition
Care Coordination
Specialty Consults
Primary Healthcare
Allied Health Services
Research and Training
Family & Care Provider Health
Education Center
EMERGING MODELS
87.8% of DDHC Patients in top three clinical risk groups
7.6%Critical
57.4%Complex
Chronic
22.7% Simple
Chronic
Source: Community Health Partnership, Regional Care Collaborative Organization (RCCO), Region 7, Colorado (2017)
DDHC PATIENT CLINICAL PROFILE
Cross-systems of Care Integration
EMERGING MODELS
Source: Ervin & Rubin (2016)
IMPACT: HEALTH OUTCOMES
Depression Hypertension HyperlipidemiaSource: Guerra, et al. (2019)
IMPACT: HEALTH OUTCOMES
2016, p=0.0017
Source: Guerra, et al. (2019)
IMPACT: PROVIDER SATISFACTION
2015 2016 2017
DDHC $2114 $2448 $2418
Non-DDHC $2675 $3019 $3222
dif <21.0%> <18.9%> <25.0%>
Source: Community Health Partnership, Regional Care Collaborative Organization (RCCO), Region 7, Colorado
IMPACT: PHARMA
2015 2016 2017
DDHC $44,182 $43,069 $43,688
Non-DDHC $53,275 $55,361 $55,214
dif <17.1%> <23.0%> <20.9%>
Source: Community Health Partnership, Regional Care Collaborative Organization (RCCO), Region 7, Colorado
IMPACT: TOTAL MEDICAID SPEND
0-6 mos. paneled ≥6 mos. paneled
Happy 57.1% 77.4%^
^p=.03
"Taking everything into consideration, during the past week
have you been happy or unhappy with the way you live your
life?” (Money Follows the Person QoL Survey)
Source: Community Health Partnership, Regional Care Collaborative Organization (RCCO), Region 7, Colorado
IMPACT: QUALITY OF LIFE
• Culturally competent care acknowledges and respects patient values, beliefs,
traditions, and other aspects of the individual’s culture with the ultimate goal of
improving health (Eddey & Robey, 2005)
• People with disabilities (PwD) have been marginalized in health care, which creates
distance between the health care professional and the patient (US Department of
Health and Human Services, 2005; Robey, Minihan, Long-Bellil, Hahn, Reiss, & Eddey,
2013)
• The notion of disability cultural competency puts the professional on notice that the
patient’s experience may be beyond the realm of one’s own experience and imagination
and that the patient’s perspective must be actively sought out (Robey, Minihan, Long-
Bellil, Hahn, Reiss, & Eddey, 2013)
CULTURALLY COMPETENT CARE
CULTURAL COMPETENCE
The ability to interact effectively with people of different
cultures, and to be respectful and responsive to the health beliefs
and practices—and cultural and linguistic needs—of diverse
population groups.
Culturally Competent Care IDD
• Intersection of disability and disease
• Genetic syndromes
• Communication challenges
• Poverty
• Social determinants of heath (SDOH)
Source: Substance Abuse and Mental Health Services Administration (SAMHSA), U.S. Department of Health and Human Services
SDOH
• Medicaid-induced poverty
• Access to healthcare, mental/behavioral health, ED use
• Health promotion and wellness (tailored to IDD)
• Long term services and supports system
Group homes—food budgets
• Access to healthy foods, snacks
• Direct support staff as role models (to what behavior are people exposed?)
• Massive rates of unemployment
• Virtually no higher education
• Communication barriers
• Genetics, common co-morbities
SDOH
Periodontal (gum) disease occurs more
often and at a younger age in people with DD.
Difficulty performing effective brushing and
flossing may be an obstacle to successful
treatment and outcomes.
Malocclusion occurs in many people with
DD, which can make chewing and speakingdifficult and increase the risk of gum disease, dental caries, and oral trauma.
Damaging oral habits such as teeth grinding and clenching, food pouching, mouth
breathing, and tongue thrusting can be a problem for people with DD.
Delayed tooth eruption may occur in children with DD such as Down Syndrome.
Children may not get their first baby tooth until they are 2 years old.
Trauma and injury to the mouth from falls or accidents may occur in people with
seizure disorders or cerebral palsy.
Source: National Institute of Dental and Craniofacial Research
SDOH: PSYCHOTROPICS
Source: National Core Indicators
SDOH: OBESITY
64%
Source: National Core Indicators
CULTURAL COMPETENCE
CULTURAL COMPETENCE
Source: https://cuelearning.org/courses/caring-for-people-with-intellectual-and-developmental-disabilities-idd-in-the-primary-care-setting/
STRATEGIES
Cross-systems of Care Integration
Source: Ervin & Rubin (2016)
STRATEGIES: DSP
Source: www.nadsp.org
STRATEGIES: DSP
Source: https://www.nutsandboltstools.com/docs/Nuts%20and%20Bolts_June%2018%20with%20page%20numbers-FINAL%20for%20Printing.pdf
STRATEGIES: MEDICAL SCHOOL
Source: American Academy of Developmental Medicine and Dentistry; avail. at https://aadmd.org/page/ncidm-preamble
National Curriculum Initiative in Developmental Medicine
STRATEGIES: MEDICAL SCHOOL
Source: http://aadmd.org/sites/default/files/NCIDM_Overview-AADMD_2019_presentation.pdf
STRATEGIES: HEALTH ADVOCACY
STRATEGIES: HEALTH ADVOCACY
STRATEGIES: HEALTH ADVOCACY
Financing Systems
High costs (disproportionality)
Conveyor Belt medicine
Disincentives to integration
Bi- and Tri-furcated systems of care
Healthcare Reform
Block-granting Medicaid
Pre-existing conditions
Medicaid Managed Care
Why is MUP so hard?
LTSS Reform
Work requirements
Block-granting Medicaid
RESOURCES: HEALTH ADVOCACY
www.aadmd.org/policy-statements
http://aaidd.org/news-policy/policy#.WpMnlkxFyUk
https://www.thearc.org/what-we-do/public-policy
http://www.eparent.com/education/a-gps-for-families-of-people-with-
special-needs/
https://www.specialolympics.org/health.aspx?src=navwhat
https://www.specialolympics.org/health.aspx?src=navwhat
http://www.ncsl.org/research/health.aspx
https://ctb.ku.edu/en/table-of-contents-community-assessment/choosing-strategies-to-promote-
community-health-and-development
https://withfoundation.org/blog/
RESOURCES: HEALTH ADVOCACY
STRATEGIES: PEOPLE WITH IDD
David A. Ervin, BSc, MA, FAAIDD
Jewish Foundation for Group Homes
240.283.6001
www.jfgh.org
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