health inequities experienced by those with intellectual & developmental disabilities presented...
TRANSCRIPT
Health Inequities Experienced by those with
Intellectual & Developmental
Disabilities
Presented by Alexandra Andrews
Overview Summary of organization Defining intellectual & developmental disabilities How many people with I/DD? Health Inequities Experienced:
Access IssuesLimited doctors that specialize in I/DDBasic testing not always providedChronic ConditionsAging PopulationAdditional Inequities
Similarities Between Rural and I/DD Inequities Resources from HCAP, Colorado, and Internet
AdvocacyDenver Profile Formerly the Arc of Denver; still an Arc Chapter.
Non-profit, civil rights, advocacy organization serving people with I/DD of all ages.
Assistance/Guidance provided in many areas: Housing, transportation, financial stability, legal
services for special education, employment, and health care.
Initiate public policy change in order to promote positive solutions.
Health Care Advocacy Program (HCAP) Profile
Guide adults with I/DD through the health care system.
Connect with organizations in order to provide education regarding chronic disease prevention and management.
Track gaps in the health care system.
New bilingual staff - English and Spanish.
Primarily funded by the Colorado Health Foundation
Defining I/DDIntellectual disability
is a below average cognitive ability with 3 characteristics:
I.Q. is between 70-75 or below
Significant limitations in adaptive behaviors (the ability to adapt and carry on everyday life activities such as self-care, socializing, communicating, etc.)
The onset of the disability occurs before age 18.
Developmental Disability includes people who have an ID, autism, cerebral palsy, severe seizure disorder, or a severe head injury.
Under federal law, DD means a severe, chronic disability of an individual that:
is attributable to a mental or physical impairment or both.
is manifested before 22 yo.
is likely to continue indefinitely
results in substantial functional limitations in 3 or more major life areas.
People with I/DD in United States
People with I/DD in Colorado
Access: Poverty
Access: Employment
Access: Transportation Both the American’s with Disabilities Act of 1990
(ADA) and the Rehabilitation Act of 1973 require that transportation services be provided to people with disabilities.
BUT, there are still limitations: cost, confusion, physical and mental health barriers (half the people with I/DD are on psychotropic medications).
People with disabilities are twice as likely to have inadequate transportation.
Access: Housing SSI = $703 per month vs. Average rental = $785 per month Limited homes that accommodate physical impairments. Availability of HUD homes is limited across the country. Discrimination is common. HCBS Waiver can help access host homes, group homes,
nursing facilities, or other residential services. Barriers to these residential services:
Not the right waiver Behavioral and/or mental health problems Waiting lists Inappropriate/untrained staff
Access: Technology
Inability to access technology – cannot purchase device and/or get to a location where a computer is available.
“Personal health record adoption has many perceived and real barriers. As with any new technology, failure can often be linked to little consumer involvement during planning, design, and implementation. Lack of trust in the provider is another barrier, as are poor computer and internet skills, fear of technology, inadequate access, low health literacy, and limited physical and cognitive abilities.”
Source: J Am Med Inform Assoc. 2011 Jul-Aug; 18(4): 515–522.
Access: Communication
Limited capacity to verbally communicate
Limited availability or funds for interpreters
If family members have abandoned a person or passed away than medical history can be limited or inaccurate.
Source: A Blind Spot in the System: Health Care for People with Developmental Disabilities, September 2008
Staff reports can be inaccurate
Access: Dental Coverage
Higher rate of gingivitis and periodontal disease than the general population.
Cavities occur at the same rate as the general population. However, the prevalence of untreated cavities is higher.
Malocclusion, missing permanent teeth, delayed eruption, and enamel hypoplasia are all more common.
Damaging oral habits may be present.
Access: Mental Health
Limited providers know how to treat mental health concerns in people with I/DD.
36 to 50 percent of people with I/DD are on psychotropic medications. Lewis et al (2002)
Watch - Challenges of a Dual Diagnosis Webinar by Catherine Strode and Sarah Avrin – http://www.advocacydenver.org/news-events/webinars/
Medical Proficiency
“Few professional health care training programs address disability issues in their curriculums, and most federally funded health disparities research does not recognize or include people with disabilities as a disparity population.”
Source: The Current State of Health Care for People with Disabilities
Publication date: September 30, 2009, by the National Council on Disability
Medical Proficiency, Continued “…people with disabilities are affected
disproportionately by barriers to care. These barriers include health care provider stereotypes about disability, lack of appropriate training, and a lack of accessible medical facilities and examination equipment, sign language interpreters, and individualized accommodations.”
Source: The Current State of Health Care for People with Disabilities
Publication date: September 30, 2009, by the National Council on Disability
Basic Tests NOT Provided Women with I/DD frequently do not received
basic gynecological and breast exams.
Men with I/DD frequently do not receive tests for testicular and prostate concerns.
Other basic testing is not done, because medical staff may not understand all the health concerns of the patient.
Chronic Conditions
“A higher percentage of adults with disabilities (40%) report fair or poor health than do adults without disabilities (10%).”
“People with disabilities are often more susceptible to preventable health problems that decrease their overall health and quality of life.”
Source: CDC website
Aging Population
641,000 adults with I/DD age 60 or older.
76% of people with I/DD live at home.
Over 25% of families supporting a child or other relative in the home are headed by persons age 60 or older.
Source: Fuijara, G. (2007). Emerging policy challenges in intellectual disabilities, mental retardation, and developmental disabilities research reviews.
Additional Inequities
Care Coordination Long-term care services Prescription medication coverage &
inability to manage them. Durable medical equipment Assistive technologies
Comparing People in Rural Areas and People with I/DD
Aging Poverty Transporation Lack of providers
PrimaryMental Health
High Risk of Chronic Conditions
Health Resources Denver Area:
Primary, Dental, and Mental Health: Denver Health Medical Center University Hospital Metro Community Provider Network
Potomac Street Location – For elderly and those with disabilities 303-360-3712
Homeless Services - http://www.mcpn.org/en/csd/homeless.html
Stout Street Clinic: 303-293-2220Homeless Services
Mental Health ONLY: Aurora Mental Health Center (DDMI Program) – 303-
617-2300 Mental Health Center of Denver (MHCD) - 303-504-
7900
Health Resources, Continued Denver Area:
Dental ONLY: Comfort Dental – Call any location. Free service on
Christmas Eve. University Dental School – Call 303-724-6900 to
become a patient. Dental Lifeline Network: get on waiting list at 303-534-
3931Formerly the National Foundation of Dentistry for
the Handicapped - access to comprehensive dental services for people with disabilities, elderly, or medically at-risk.
Concorde Hygiene Dental Clinic –720-222-2094, cleanings ONLY! Regular cleaning $15. Deep cleaning $30.
Health Resources, Continued Colorado (Outside Denver):
The Resource Exchange in CO Springs – for those with I/DD Developmental Disabilities Health Center (primary) New Heights Behavioral Health Center (mental/behavioral
health)
Internet Resources: HealthMeet Program – National Arc -
www.thearc.org/page.aspx?pid=3686 National Center on Health, Physical Activity, and Disability
(NCHPAD) - www.ncpad.org/ Health Pamphlets -
www.easyhealth.org.uk/categories/health-leaflets CO State benefits enrollment - coloradopeak.force.com/ CO Private insurance enrollment - connectforhealthco.com/ American Association on Health & Disability - www.aahd.us/ National Association for the Dually Diagnosed - http://thenadd.org/
Health Resources, Continued
Health Classes Offered by the Health Care Advocacy Program – call 303.974.2520
Healthier Living Colorado Classes – learn to manage chronic conditions! Provided collaboratively between HCAP & Consortium for Older Adult Wellness (COAW).
Health Matters Classes– nutrition and exercise program
Diabetes & Me classes Staying Healthy classes – basic tips for avoiding
colds and managing health.
Contact Alexandra Andrews
[email protected] (office)Website – advocacydenver.org
Alicia [email protected] 720.248.2748 (office)Website - coruralhealth.org