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Helping People Live Better Helping Lives. Health Disparities in Developmental Disabilities Individuals with Intellectual and 2

Helping People Live Better Helping Lives. Health Disparities Experienced by People with ID/DD These Disparities Barriers Leading/Relating to Strategies to Reduce Health Disparities • • • This Presentation Will Cover This Presentation Will 3 8 8 cal or psychiatric conditions related to their l disorders, dementia and psychiatric/behavioral l disorders, health care, access to wellness and preventative access health care, ong term disability beginning prior to age 22 that age 22 to disability beginning prior ong term oning, development of adaptive skills or some US have a developmental disability.

Helping People Live Better Helping Lives. 3 People with DD including to have the same healthcare needs as any other person, access A developmental disability (DD) is a severe, l developmental disability is a severe, (DD) A medical, dental and mental culturally competent People with DD are at increased risk of some medi affects cognitive functioning, physical functi affects combination of these impairments. Approximately 4.5 million people in the care coordination and accessible healthcare facilities. services, including seizure and other neurologica disability, disorders. • • • • Developmental Disabilities 4 7 2, 3, 6 1, 6, 8 2, 6 Most common causes of death differ from the Most common causes of death differ of general population and show higher rates mortality due to illnesses/conditions less likely to lead to death in the general population. More likely to have poorly managed chronic health conditions. psychotropic of prescribed Higher rates medication. show support People needing behavior higher rates of many disparities than others in the DD population. • • • • 3 5, 8 2, 8 3, 6, 8 3, 6 6 Helping People Live Better Helping Lives. 2, 7, 8 More likely to report being in poor health. likely to report More Shorter average life expectancy than the general population. Less likely screenings to receive preventative and vaccinations. of undiagnosed hearing and Higher rates vision impairments. of obesity. Higher rates Higher rates of poor dental health. Higher rates of diabetes, arthritis and cardiovascular diseases, including asthma. • • • • • • • Health Disparities Experienced by People with DD 5 there are a multitude of individual barriers that tations related to his/her disability to his/her tations related than a person’s developmental disability than a person’s quality health care for people with DD.

Helping People Live Better Helping Lives. People with developmental disabilities lack access to qualityPeople with developmental disabilities lack access health care. so Quality health care has a variety of components, Barriers to quality health care fall into several categories: • barriers Systemic • barriers Societal/attitudinal • functional limi due to a person’s Barriers contribute to a lack of access to contribute to a lack of access •other influenced by factors Barriers • • • Identified Barriers to Health Equity 6 2, 8 2, 4, 8 pre-med programs or medical schools to provide understand and accommodate the specific needs of people the specific and accommodate understand accommodate the specific needs of people with ies experienced by people with disabilities, including typically not inclusive of people with DD. 2, 8 6, 8

Helping People Live Better Helping Lives. The US health care system was not designed to The US health care system was not designed into health disparit There is a lack of research are Public campaigns for health promotion There are no curriculum requirements for undergraduate developmental disabilities, especially as the life expectancy for people with DD increases. as the life expectancy especially disabilities, developmental developmental disabilities. education that prepares medical professionals to disabilities. with developmental • • • • Systemic Barriers 7 8 negative experiences with health care providers negative experiences care or having psychiatric diagnoses may cause people care or having psychiatric diagnoses an and civil rights of people with DD continues to be a with DD continues and civil rights of people an 4, 8 medical care when they need it. 4

Helping People Live Better Helping Lives. Societally, there are many stereotypes, misconceptions and prejudices towards people with DD. Medical Societally, to developmental specific with DD and little education to people who have had little exposure professionals disabilities often carry these attitudes. to the hum related Societal lack of understanding Societal stigmas surrounding receiving psychiatric barrier to progress in many areas. with DD to avoid seeking specialty health care when they need it. People with DD and their families/advocates report that less likely to seek have made them • • • • Societal/Attitudinal Barriers 8 7 limitations to their communication skills which disabilities, sensory processing issues and other 2 when it is important or necessary to seek medical or necessary when it is important use wheelchairs or need to avoid bright lighting. or need use wheelchairs and other physical environments where health care is t to provide treatment to participants and impact a t to provide treatment edical providers and understanding recommendations or 7 are three to five times more likely to demonstrate challenging likely to demonstrate are three to five times more

Helping People Live Better Helping Lives. People with developmental disabilities often have functional Cognitive limitations can be a barrier to understanding Medical providers often do not have access to specific equipment that may be with a disability. to a person treatment to provide needed create difficulty in communicating their needs to create difficulty m instructions from their medical providers. People with developmental disabilities Challenging behavior may make it difficul behavior. compliance with treatment plans. person’s plans. care and to understanding or following treatment People with developmental disabilities may have physical needs. For example, medical centers, exam rooms who to people are often not fully accessible provided • • • • • Barriers Related to Disability 9 ity groups that experience health disparities, the contribute to health disparities that are very common 6 significant disparities experienced by 6, 8 8

Helping People Live Better Helping Lives. When people with DD also fall into racial and other minor with DD also fall into racial and other When people There are numerous social determinants of health that disparities they experience are compounded. including: in the DD population, people with DD related to their disability. with DD related people Issues in these areas compound the already • Low income/socioeconomic status • Inadequate or inaccessible housing • Unemployment • Lack of reliable transportation • Lack of social connectedness • • • Barriers Related to Other Disparity Groups 10 oviders and healthcare practices/organizations th care for people with DD, change is needed on multiple th care for people with DD, change is needed ers to people with DD receiving quality health care, there to people with DD receiving ers strategies to improve access to health care for people with DD, in care for people access to health to improve strategies

Helping People Live Better Helping Lives. In the same way that there are a multitude of barri are also many recommendations and system, including: levels of our healthcare •at a level changes federal or nationwide organizational Systemic •at a state or local level changes Systemic • Individual changes that can be made by medical pr order to reduce the health disparities they experience. to quality heal barriers the identified fully address To • • Strategies to Address Disparities Strategies to 11 8 2, 4, 8 8 making recommendations nts for undergraduate medical programs and ies tasked with studying and inclusive and accessible to people with disabilities. xity and fragmentation of health care systems. ty, inadequate housing and accessible transportation. ty, 2, 4, 8 6, 8

Helping People Live Better Helping Lives. 2, 8 Health care reform to reduce funding comple Recognition of people with disabilities, including developmental as a demographic group that experiences health disparities by government agenc to make public health initiatives more Efforts Creation and standardization of curriculum requireme to address issues of Continued efforts pover to make statewide or local public health initiatives more inclusive and Efforts accessible to people with disabilities. Improve data collection on demographic information related to disabilities. to reduce health disparities. to reduce schools to ensure medical professionals receive education on the specific needs and human rights of people with disabilities. At a national level: At a national • • • • At a state or local level: • • • Systemic Changes to Reduce Health Disparities 12 11 4 4, 11 is provided is accessible to people with all types of to people is accessible is provided ialists if a provider feels like he/she is not well if a provider ialists e to support people with developmental disabilities in on to increase understanding of the specific medical understanding to increase on ion on the human rights issues and societal stigmas issues and societal rights on the human ion 8

Helping People Live Better Helping Lives. Medical providers may benefit from continuing educati Medical providers may benefit from continuing educat not just their disability. as a whole person, See each patient Encourage self-advocacy and self-determination for patients with DD. Ensure that the physical environment in which health care needs of people with developmental disabilities. of people with developmental needs and stereotypes faced by people with developmental disabilities. disabilities and that specialized medical equipment needed to treat people with disabilities is available. Maintain awareness of programs and resources availabl various aspects of daily life and refer patients to resources that may benefit them. from spec with DD to seek treatment patients Encourage equipped to manage the specific needs of patient. patients with developmental disabilities the same preventative health care Offer to all other patients. that is offered • • • • • • • • Changes at the Provider or Health Care Organization Level 11 13 Give clear instruction when a patient needs to return or see another medical provider (e.g. for follow-up, for specific symptoms, specialized health care, etc.) information in asking for additional Be proactive with DD to help manage a person when treating that may arise related to challenging barriers communication limitations and physical behavior, accessibility concerns. • • ting effective communication with a patient with DD: ting effective

Helping People Live Better Helping Lives. Communicate with the patient in a respectful Communicate manner. with DD may a person Be patient and be aware need extra time to speak or act. Provide instruction/resources in writing and/or in formats that are accessible to the patient. Give patients resources that may help them better their medical conditions, even when understand they don’t request it. Encourage patients who struggle with and communication to write down their questions concerns before each visit. • • • • • Changes at the Provider or Health Care Organization Level The following strategies may be helpful in facilita 14 e are things that each of us can do today to obstacles in their lives. Lack of access to is inclusive and supportive of people with DD. is inclusive and supportive unity each day to be an advocate for people with he resulting poorer medical outcomes should not be

Helping People Live Better Helping Lives. People with developmental disabilities face many People with developmental disabilities face and t health care culturally competent quality, face. an obstacle they Systemic changes are complex and take time, but ther that a health care system begin working towards Everyone in the health care field has the opport DD, with our colleagues and employers, and in our society. society. and in our DD, with our colleagues and employers, • • • In Conclusion… 15 ts nUse nUse Journal of Research ues and Do ity in the o?. Minneapolis: Research Institute, Massachuset Research and Delmarva Foundation. (2014) Medicatio (2014) Foundation. and Delmarva lopmental Disabilities: What Are the Iss Disabilities: What lopmental e Rights of Persons with Disabilities. of Persons e Rights re Indicators, Human Services Services Human re Indicators, with intellectual disabilities: what do we What do know? d disabilities: with intellectual ors of Developmental Disabilities Services, and Human Services and Human Services Disabilities Services, of ors Developmental ealthcare for ealthcare persons with and disabil intellectual developmental State Efforts to Reduce Overuse [Presentation] to Reduce Overuse State Efforts a Division Disabilities, a Division of Developmental (5), 431-446. 27 , ies Among People with and Deve Intellectual ies , 83. Human rights. Yes!: Action and Advocacy on th Action and Yes!: rights. Human

Helping People Live Better Helping Lives. Frontiers in Frontiers Public Health, 2 Department of Developmental Services, of Georgi Services, Department Developmental in Adults with ID/DD Living in Community Homes and Homes in Community ID/DD Living with Adults in community. Applied Research in Disabilities Intellectual Race and Ethnicity Play a Race and Ethnicity Role? [Presentation] University of Minnesota Human Rights Resource Center Human Rights Resource of University Minnesota Health Disparit (2014). Exploring Institute. 1.and National Co Network of Options Resources, Community American 3. Krahn, G. L., & Fox, M. H. of Health disparities adults (2014). 2.A., B., Hennen, Merrick, J., & H Morad, M. (2014). Ervin, D. 4. Lord, J. E., & N. Flowers, (2012). 5. Report 2016-2017. Survey: Nebraska Adult Consumer (2017). National Core Indicators. 6.of Direct State Association National National Core Indicators, References 16 ness of al ith Mental Research . Washington, D.C.: National . Washington, int to Improve the Health int to of w Improve Persons rgeon General's Call to Action to Improve the Health and Well to Improve Action Call to General's rgeon Intellectual and Disabilities Who Developmental Need Behavior bilities. (December 13, bilities. (December 2006). ors of Developmental Disabilities Services, and Human Services and Human Services Disabilities Services, of ors Developmental . (2002). Closing the Gap: A National Bluepr A Closing . (2002). the Gap: The Current State of with State Care for People Disabilities Health The Current he Rights of Persons with Disa of Persons he Rights it Means to You. [Brochure] You. to it Means

Helping People Live Better Helping Lives. Institute. (2014). What Do Institute. NCI with Data Reveal about Individuals Support? [Presentation] Council on Disability. Persons with Disabilities: What Retardation. 8. National Council on (2009). Disability (U.S.). 9. on United Nations Convention t 7.of Direct State Association National National Core Indicators, 10. US of Health and Department Human Services 11.The 2005 Su US of (2005). Health and Department Human Services. References (continued) 17 dhhs.ne.gov 877-667-6266 Sarah Henrichs [email protected] Policy and Communications Team Policy and Communications

DHHS Division of Developmental Disabilities DHHS Division of People Live Better Helping Lives. @NEDHHS NebraskaDHHS @NEDHHS