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Healthcare Access for Personswith Disabilities

Part 1: Persons with Physical andSensory Disabilities

Support for this training comes from the Centersfor Disease Control & Prevention through theFlorida Office on Disability and Health,CFDA# 93.184 State Implementation Projectsfor Preventing Secondary Conditions andPromoting the Health of People with Disabilities

Table of Contents

• What is disability? What is health?

• Health and healthcare disparities for personswith disabilities

• Barriers to healthcare for persons withdisabilities

• Access issues, WID video: Access to MedicalCare: Adults with Physical Disabilities

• Resources for improved healthcare for personswith disabilities

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Objectives

• Participants will gain a better understanding ofhealth, wellness, and care issues concerningpeople with physical and sensory disabilities andwill:

– Identify the four goals of The Surgeon General’s Call toAction to Improve the Health and Wellness of Peoplewith Disabilities,

– Recognize the four barriers to quality healthcare, asaddressed in the Americans with Disabilities Act,

– Learn a minimum of five skills to increase goodcommunication and rapport to enhance accurateassessment and delivery of quality care.

What is health?

World Health Organization (WHO) definition:

• Health is a state of complete physical, mentaland social well-being…

• Health is a resource for everyday life, not theobjective of living.

• Health is a positive concept emphasizingsocial and personal resources, as well asphysical capacities.

What is Disability?ADA definition

The term ‘disability’ means, with respect to anindividual –

a. a physical or mental impairment thatsubstantially limits one or more of the major lifeactivities of such individual;

b. a record of such impairment; or

c. “being regarded as having such animpairment.” (P.L. 101-336, Sec. )

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International Classification of Functioning,Disability, and Health (ICF)

• Developed by the World Health Organization.• Provides a unified language and framework for

the description of health and health relatedstates.

• The ICF puts the notions of ‘health’ and‘disability’ in a new light.– It acknowledges that every human being can

experience a decrement in health and therebyexperience some degree of disability.

• ‘Mainstreams’ the experience of disability andrecognizes it as a universal human experience.

• For ICF, disability serves as an umbrella termfor impairments, activity limitations orparticipation restrictions.

• In general, impairments are problems in bodyfunction or structure that, to a greater orlesser extent, affect a person’s ability toengage independently in some or all aspectsof day-to-day life.

Definition of Disability from ICF

International Classification ofFunctioning, Disability, and

Health• Shifts the focus from cause to impact, which

places all health conditions on an equal footingallowing them to be compared using a commonmetric – the ruler of health and disability.

• ICF attempts to combine the medical and socialmodels in order to provide a coherent view ofhealth from a biological, social, and individualperspective.

• ICF measures the impact of the environment onthe person's functioning by documentingContextual Factors.

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Today, 54 million Americans, orone in five people, are living with at

least one disability, and mostAmericans will experience a

disability some time during thecourse of their lives.

As we age, the likelihood of having adisability of some kind increases.

Presence of Disability Related To Age

01020304050607080

45-54 65-69 80+

Age Group

%

However, disability can become a factof life for anyone at any time.

Some people are born with a disability; othersacquire a disability from an accident or illness;

and still other people develop a disability as theyage.

The reality is that just about everyone — women,men and children of all ages, races and

ethnicities — will experience a disability sometime during his or her life.

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The Surgeon General's Call to Action toImprove the Health and Wellness of

Persons with Disabilities, 2005

• People with disabilities have healthcare needslike everyone else.

• To get and stay healthy, people with disabilitiesneed to be able to obtain the healthcare theyneed when they need it, just like everyoneelse.

• People with disabilities needhealthcare professionalswho really listen to,communicate with, andrespect them.

People with disabilities needhealthcare professionals whotreat all of their health needs,not just their disability.

The Surgeon General's Call to Actionto Improve the Health and Wellness of

Persons with Disabilities, 2005

1. Increase understanding nationwide that peoplewith disabilities can lead long, healthy, andproductive lives

2. Increase knowledge among healthcareprofessionals and give them tools to screen,diagnose, and treat the whole person with adisability with dignity

3. Increase awareness among people withdisabilities of the steps they can take todevelop and maintain a healthy lifestyle

4. Increase accessible healthcare and supportservices to promote independence for peoplewith disabilities

The four goals of this "Call toAction" are:

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According to the most recent census data,around 52 million people with disabilities

live in their community.

About 2 million live in nursing homes andother long-term care facilities.

U.S. Census Bureau 2002

Health Challenges

• People with disabilities share manyof the same challenges as thosewithout disabilities when it comes totheir own health and well-being.

• Foremost is having the toolsand the knowledge – andknowledgeable healthcareprofessionals – to help them enjoyand maintain full, healthy lives.

Long, productive, healthy lives canbe achieved with:

• Accommodations and supports,• Ample access to healthcare,• Engagement in wellness activities,• and the impetus that comes from supportive

friends and families.

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Health Disparities for Persons withDisabilities

• Only 28.4% of people with disabilities report theirhealth to be excellent or very good vs. 61.4% ofpeople without a disability (CDC,2004a).

• While a disability doesn’t necessarily implyillness, some disabilities may lower the thresholdto an array of secondary conditions that cannegatively impact their health status and thequality of their lives.– 87% of persons with a disability report at least one

secondary condition vs. 49% of those people without adisability (Kinne et al., 2004).

What are secondary conditions?

• Physical, medical, cognitive, emotional, orpsychosocial consequences to whichpersons with disabilities are moresusceptible by virtue of an underlyingcondition

• Secondary conditions cause adverseoutcomes in health, wellness, communityparticipation, and quality of life

(Hough, 1999)

Common Secondary Conditions

(Simeonsson & McDevitt, 1999)

• Depression • Hypertension

• Urinary tract infections • Fractures

• Un-wanted weight gain • Skin lesions

• Chronic pain • Contractures

• Excessive fatigue • Social isolation

• Respiratory infections

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Preventive care and early interventioncan reduce some complications.• Some secondary conditions can be

prevented or decreased by:

– a combination of health maintenancepractices,

– removal of environmental barriers, and

– improved access to effective medical care

• Other conditions are inevitable componentsof certain types of disabilities and can bemanaged but not prevented.

Many people with disabilities considerthemselves healthy and well, whichlikely enhances their quality of life.

•A healthy lifestyle enables people withdisabilities to learn, work, and live activelyin their own communities,

•but health risks and disparities associatedwith disability can make achieving goodhealth more difficult.

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Providers who understand that people withdisabilities can be healthy, active, andassertive participants and co-managers oftheir health and healthcare, can be oftremendous assistance in helping peopleselect and practice health promotionbehaviors and activities that increase well-being.

Access to Healthcare Challengesinclude:

• Insufficient knowledge and awareness of disabilityby the public, healthcare and wellness serviceproviders, educators, administrators, the mediaand others.

• In a recent survey, 25 % of adults with disabilitiesreported that they had difficulty finding a doctorwho “understands my disability” (Henry J. KaiserFamily Foundation, 2003).

Access to Healthcare Challengesinclude:

• Healthcare professional and communityattitudes and behaviors that see andrespond only to the disability not to thewhole person.

• For example, women with disabilities areless likely to receive preventive care.• Only 74% of women with disabilities ages 18+

report receiving a pap smear vs. 78% of womenwithout a disability (CDC, 2004)

• 55% of women with disabilities ages 40+ reportreceiving a mammogram vs. 61% of womenwithout a disability (CDC, 2004)

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Other Challenges:

• Insufficient healthcare andwellness promotion services andinformation that is adapted forpersons with disabilities.

• Service systems that do notmake use of innovative andcreative approaches to enhancethe health and wellness ofpersons with disabilities.

• Physical/architectural barriers

• Communication barriers

• Attitudinal barriers

• Social/economic policybarriers

Understanding these barriers and obtainingaccessibility training is helpful for bothprofessionals and support staff.

Barriers to Care

ADA Requirements for HealthFacilities and Practitioners

• Provide access for people with disabilities tohealthcare services.

• The law requires reasonable accommodation– meaning those changes that are readilyachievable and do not present an unduehardship on the facility.

• Practitioners and facilities need to learn aboutand provide specific accommodations forpeople with the full range of disabilities.

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Video: Treating Adults with PhysicalDisabilities: Access and Communication

Key Points

• People with disabilities require the same qualityof health service and preventive care as anypatient, but may be under-served and receiveless than quality care.

•Defining “health” as the absenceof disability or chronic illnessnegatively affects people withdisabilities.

People with disabilities canlead active, fulfilling lives,which include work andcommunity involvement,sexual relationships andparenting, or could achievethese with appropriatecommunity resources.

Avoid stereotyped assumptions

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Key Points

• Advance access planning in the clinic cansave time and improve quality of care.

• Listen attentively to your patients withdisabilities to understand their background andfunctional needs.

• Many people with disabilities have anexpertise in their conditions, which should berespected and reinforced. Others, particularlypeople who have recently acquired a disability,need training and support to become activepartners in their care.

Key Points

• A team approach works best to accommodatecomplex health needs.

• Avoid unnecessary referrals to specialists.

• Check accessibility when referring patients todiagnostic testing and specialty clinics. Checkthat referred-to-providers accept the patient’sinsurance.

When treating a person with adisability, remember:

• Talk to the patient, not someone whoaccompanies them.

• Ask, “How can I help you?” and respect theanswer.

• Ensure that educational materials are easilyaccessible.

• Allow sufficient time for history taking and exam.• Use people first language-- refer to the individual

first, then to his or her disability. (It is better tosay "the person with a disability," rather than "thedisabled person.")

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When treating a person who isblind or visually impaired:

• Identify yourself and others who may be with youwhen walking into the exam room.

• Speak using a natural conversational tone andspeed.

• Feel free to use words that refer to vision duringthe course of conversation.

• Guide people who request assistance byallowing them to take your arm just above theelbow when your arm is bent. Walk ahead of theperson you are guiding. Never grab a personwho is blind or visually impaired by the arm andpush him/her forward.

For people who are blind or visuallyimpaired:

Provide written material:-In an auditory format-On computer disc-In Braille or large print

When treating a person who is deafor hard of hearing:

• Ask how to best communicate.• Provide an interpreter, if necessary for effective

communication.– Patients cannot be charged for interpretation.– Family members should not be pressured to

interpret to save time or expense.• Provide written educational material.• Look at the person while speaking. Do not place

your hands in front of your face or lips whentalking.

• Speak using a natural conversational tone andspeed. Avoid shouting.

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Resources to locate Interpreters

• Florida Registry of Interpreters for theDeaf– http://www.fridcentral.com

• Florida Coordinating Council for theDeaf and Hard of Hearing (FCCDHH)– http://www.fccdhh.org

• Deaf Services Bureau of West CentralFlorida– http://www.deafservicesbureau.org– 1-800-616-4293

• American Sign Language Services, Inc.– http://www.aslservices.com

When treating someone who usesa wheelchair:

• Place yourself at eye level in front of the personto facilitate conversation.

• Never patronize people who use wheelchairs bypatting them on the head or shoulder.

• Provide access to exam areas.• Provide assistance if necessary for a full and

complete exam (even if it requires more time orassistance).

• Avoid pushing a wheelchair unless asked.• Obtain adjustable exam tables for your facility, if

possible.

Interacting with people who havespeech impairments:

• Be respectful; never assume that the person has acognitive disability just because he or she hasdifficulty speaking.

• Listen attentively when they are speaking. Bepatient and wait for the person to finish, ratherthan correcting or speaking for the person.

• If you do not understand what the person has said,do not pretend that you did. Ask the person torepeat it; or, repeat what you understood andallow the person to respond.

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Considerations

• Is there an accessible entrance to the facility? Is itclearly marked?

• Are exam rooms accessible to wheelchair users?• Was a sexual history taken? (often neglected due

to a stereotype of asexuality.)• Are medical and non-medical staff trained to be

respectful and non-patronizing?• Is there adequate time scheduled in the

appointment for the patient to adequatelycommunicate without pressure to hurry?

• Are staff familiar with TDDs and availablecommunication relay systems?

Helpful Resources

• Access Equals Opportunity: ADA FAQ forOutpatient Healthcare Facilities http://metroke.gov/dias/ocre/medical/htm

• A family physician’s practical guide to culturallycompetent care http://thinkculturalhealth.org

• Removing Barriers to Healthcare (architecturalaccess issues) http://www.design.ncsu.edu.cud

• Tips and Strategies to Promote AccessibleCommunication http://www.fpg.uc.edu/~ncodh

We wish to thank the World Institute onDisability for the use of their video: Access toMedical Care: Adults with Physical Disabilities.

www.wid.org

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References

• Americans with Disabilities Act of 1990, 42 U.S.C.A. § 12101 et seq.(West 1993).

• Center for Disease Control and Prevention. (2008). People withDisabilities can lead strong healthy lives. Retrieved October 22,2008 from http://www.cdc.gov/Features/Disabilities/

• Federal Communications Commission. Disability Etiquette. RetrievedOctober 30, 2008 from Federal Communications Commissionwebsite. Website:http://www.fcc.gov/cgb/dro/504/disability_primer_4.html.

• Kailes, J.I. (2000). Can Disability, Chronic Conditions, Health andWellness Coexist? Retrieved November 3, 2008 from The NationalCenter on Physical Activity and Disability website. Website:http://www.ncpad.org/wellness/fact_sheet.php?sheet=106

• Kinne, S., Patrick, D.L., Doyle, D.L. (2004). Prevalence of secondaryconditions among people with disabilities. American Journal ofPublic Health, 94(3), 443-445.

References

• National Center on Birth Defects and Developmental DisabilitiesHealthy People 2010 Chapter 6, Vision for the Decade:Proceedings and Recommendations of a Symposium.Atlanta, G.A.: Centers for Disease Prevention, December 2001.

• Preamble to the Constitution of the World Health Organization asadopted by the International Health Conference, New York,19-22 June, 1946; signed on 22 July 1946 by therepresentatives of 61 States (Official Records of the WorldHealth Organization, no.2, p. 100) and entered into force on 7April 1948.

• Sattinger, A., Sinclair, L.B., Lollar, D.J. (2003). Healthy People 2010Disability and Secondary Conditions Focus Area 6: Reportsand Proceedings, Sept. 20-21, 2002 and Dec. 4-5, 2000.Georgia: National Center on Birth Defects and DevelopmentalDisabilities, CDC.

References

• Simeonsson, R.J. & McDevitt, L.N. (1999). Disability & health: TheRole of Secondary Conditions & Quality of Life. Chapel Hill,N.C.: Office on Disability and Health; Frank Porter GrahamChild Development Center, University of North Carolina atChapel Hill.

• U.S. Department of Health and Human Services. (2005). The SurgeonGeneral’s Call To Action To Improve the Health and Wellness ofPersons with Disabilities. US Department of Health and HumanServices, Office of the Surgeon General.

• U.S. Public Health Service. (2002). Closing the Gap: A NationalBlueprint to Improve the Health of Persons with MentalRetardation. February 2001. Washington D.C.

• Wilber, N., Mitra, M., Klein-Walker, D., Allen, D., Meyers, A.R.,Tupper, P. (2002). Disability as a Public Health Issue: Findingsand Reflections from the Massachusetts Survey of SecondaryConditions. The Milbank Quarterly, 80(2), 393.

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References

• World Health Organization. (1986). Ottawa Charter onHealth Promotion. Adopted at The move towards anew public health, November 17-21, 1986 Ottawa,Ontario, Canada.

• World Health Organization. (2001). InternationalClassification of Functioning, Disability, and health.Geneva: World Health Organization.

• World Institute on Disability (Producer). (2005). Accessto Medical Care: Adults with Physical Disabilities[Motion Picture]. (Available from the World Instituteon Disability, 510 Sixteenth St., Suite 100,Oakland, CA 94612-1500).

• World Institute on Disability. (2005). Treating Adultswith Physical Disabilities: Access andCommunication: A Training Curriculum for MedicalProfessionals on Improving the Quality of Care forPeople with Disabilities. (Available from the WorldInstitute on Disability, 510 Sixteenth St., Suite 100,Oakland, CA 94612-1500).