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

dervin@jfgh.org

240.283.6001

www.jfgh.org

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