serving individuals with disabilities in a primary care setting karen luken nc office on disability...
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Serving Individuals with Disabilities in a
Primary Care Setting
Karen LukenNC Office on Disability and Health
N.C. Office on Disability and Health
• Partnership between NC Division of Public Health and UNC-CH with core funding from the CDC
• Vision: a state where people with disabilities have the opportunity everyday and in all places to be healthy and participate in all aspects of community life
• Mission: promote the health and well being of persons with disabilities across the life span in N.C by improving access to services and opportunities and decrease health disparities experienced by persons with disabilities
The Many Faces of Disability
Definitions of Disability
• Can be physical, sensory, cognitive, emotional, or communication-related
• Results in limitation in daily activities
• Limitations expected to be permanent or long term (chronic) in duration
• Can be present from birth or occur later in life
• Increases as one ages
Disability is Not “One Size Fits All”
• Persons with disabilities come to health care providers with health as their main concern
• Having a disability may impact what individuals need to do to maintain good health
• Having a disability may impact what providers need to do to help the patient maintain good health
• Health care providers do not have to know all the answers
• Providers and patients need to work in partnership to identify individual needs, resources, and strategies
Disability in the US
1 in 6 people (37.5 M adults or 16% U.S. population) report serious limitations in functioning •Health cares costs associated with disability are estimated at about $400 billion/year •>¼ quarter of all health expenditures •Medicaid and Medicare programs incur about 70% of these costs
– National Health Interview Survey, 2011
Disability in North Carolina (BRFSS 2011)
• 25% of people reported having a disability• Age groups: 17% of adults 18-44; 30% of adults 45-64;
and 40% of adults 65 years of age and older• Ethnic and racial minorities report higher rates of disability• 42% of people with disabilities report a total household
income of less than $15,000 • 28% of people with disabilities were unable to see a doctor
due to cost, compared to 16% of adults without a disability
•
Health Disparities and People with Disabilities • 4 times more likely to report their health to be
fair/poor • 2.5 times more likely to report unmet health care
needs • A narrower margin of health because of poverty
and other social determinants • Secondary health conditions such as pressure
sores or urinary tract infections
• Difficulty accessing mainstream health and public health programs
• National Health Interview Survey, 2011
Health Risk Behaviors and Chronic Disease Among Adults (NC BRFSS 2011)
% with a Disability % without a disability
Dx. of Diabetes 22 7Obese 41 25Current smokers 27 20Hypertension 52 26CVD history 20 6Current asthma 18 6
Americans with Disabilities Act
• The ADA of 1990 is a civil rights law that requires health care to make accommodations and be accessible to people with disabilities
• Protects people with:
a) physical or mental impairment that substantially limits one or more major life activity or bodily function
b) a record of such impairment
c) are regarded as having such an impairment
ADA Titles
• Title I: Employment• Title II: State and Local Government
Services and Programs• Title III: Private Entities Operating
Public Accommodations or Commercial Facilities
• Title IV: Telecommunications• Title V: Miscellaneous
*current text of ADA available at: www.ada.gov/pubs/adastatute08.htm
ADA Title II: Public Entities
• Any State or local government
• Any department, agency, special purpose district, or other instrumentality of a State or States or local government
* Providers participating in the Medicaid program stand in close relationship with the State and are covered by Title II.
ADA Title III: Public Accommodations
The following private entities are public accommodations :
(F) a laundromat, dry-cleaner, bank, barber shop, beauty shop, travel service, shoe repair service, funeral parlor, gas station, office of an accountant or lawyer, pharmacy, insurance office, professional office of a health care provider, hospital, or other service establishment;
Some ADA Requirements• Accessible parking
• Accessible path of travel: (36” wide pathways min.)
• Doors do not require more than 5lbs of force to open
• Accessible rest rooms
• Accessible signage (tactile and raised lettering with Braille)
• Accessible restrooms: at least one in any facility; stall at least 5’ by 5’; grab bars; door that swings outward
• Providing interpreters or other forms of effective communication
ACCESS: Where does it begin for patients with disabilities?
• Scheduling • Parking• Entrances / paths of
travel• Doors / elevators• Intake / waiting room• Restrooms / dressing
rooms
• Treatment room• Medical equipment • Communication
approaches / devices• Clinical forms• Health education
literature• Policies and training
Accessible Parking, NCODH publication
Accessible Waiting Room Features
• 36 inch high counter tops with knee space underneath
• • 30 x 48 inch clear floor space for
wheelchairs (moveable furniture)
• Displays, coat racks, phones at low height
• Objects are cane detectable
• Easily understood and visible directional signage
Accessible Restroom, US DOJ
• Toilet 17-19 inch high• Grab bars on back and
side• Clear floor space for
transferring• 5 ft. diameter circle for
turning around• 32 inch wide doorway • Sink no higher than 34 inch• 29 inch clearance under
sink with insulated pipes
Accessible Exam RoomUS DOJ
Accessible Exam Room Features
• At least 30 inch x 48 inch clear floor space next to exam table for side transfer
• Height adjustable exam table• Space between table and wall for examiner• Space at end of bed for transferring or lift • Accessible route (36 inch minimum width to all
patient areas• Doorways at least 32 inch wide with
maneuvering clearances (door can’t be in the path of travel)
Wheelchair Accessible ScaleUS DOJ
1. Sloped surface provides access to scale platform no abrupt level changes at floor or platform.2. Edge protection at drop off3. Large platform accommodates various wheelchair sizes4. Provide maneuvering space to pull onto and off scale.
Height Adjustable Exam TableUS DOJ
Minimum Requirements for Accessible Exam Tables:
1.Ability to lower to the height of the wheelchair seat, 17-19 inches from the floor
2.Elements to stabilize and support a person during transfer and while on the table, such as rails, straps, stabilization cushions, wedges, or rolled up towels.
3.30” x 48” clear floor space and 36” path to table also required
Transferring
• ADA does take safety into consideration • Must provide effective exam for ALL patients• If effective exam cannot be done with patient
seated/in wheelchair, means to transfer to a table is required:– Height-adjustable exam table– Portable or ceiling mounted lift– Training in safe transfer techniques
The Essentials of Effective Communication• Various auxiliary aids and services, depending on
circumstance and individual (sign language interpreters, written notes, large print, Brailled text, readers)
• Without aids and services, there is a risk of misdiagnosis, inappropriate tx, and lack of patient comprehension
• All staff must be able to communicate with patients
• A patient cannot be charged for the costs of auxiliary aids or communication services
Universal Design
“The design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.” Ron Mace
•Creates environments that are: – Safe – Easy to use by people with varying skill level– Goes beyond the law (ADA, Building Codes,
ordinances, etc.)
Universal Design Features
• Power doors and weather protection at entrances• Chairs for people who cannot stand while transacting
business• Assistive technology• Automatic flushing toilets• Unisex/family restrooms• Adjustable-height treatment and examining tables and
chairs• Scales that allow people to be weighed while sitting in
a wheelchair
So How Accessible is Your Practice?• Rate your practice environment on a scale
of 1 to 5:
• 1 very limited accessibility
• 5: meet all accessibility requirements
• What change(s) can be the starting point for improved accessibility within your practice?
People with Disability
Optimizing the Experience and Outcomes for Patients with Disabilities
• Gather information about needed assistance prior to appointment
• Integrate the patient’s disability expertise with your clinical expertise
• Ask for direction from client – successes with previous positioning, controlling spasms, transfers, communication, etc.
• Promote a realistic schedule – longer time slots, less busy part of day, or multiple visits, etc.
Strategies to Optimize Care
• Know what is typical for this patient with a disability
• Know which body systems are more affected by change
• Evaluate the patient’s risk for CVD, diabetes, osteoporosis, and chronic health conditions
• Consider earlier screening, when person is at higher risk due to the involvement of a particular body system
• Never assume; just ask – the person with a disability can be your best resource
Health Promotion
• Paradigm shift: Focus has moved from disability prevention toward health promotion and prevention of secondary conditions
• Especially important for persons with disabilities• Often start at lower end of health continuum• Highly susceptible to secondary health conditions
(ie. obesity, pressure sores, depression)• Minor illness can compromise functional mobility,
increase dependency
Making Health Care Accessible for Patients with Disabilities
• What will you consider in preparation for each patient’s health care visit?
• What will be included in the appointment and exam?
• What accommodations will you need to consider?
A Tragic Story
• A middle aged man who was deaf died from an aggressive cancer which went undiagnosed despite many months of medical appointments
• Although the patient requested a sign language interpreter but the physician communicated with written notes
• The doctor’s notes were brief and cursory and the patient struggled to communicate the details of his symptoms in writing
• Several months later the patient learned from a second doctor that he had been misdiagnosed
• By then the cancer was untreatable
A Different Story
• A middle aged woman called an ambulance to take her to the ED when she began experiencing extensive vomiting and blood loss
• She asked work colleagues to notify the ED of her pending arrival and need for a sign language interpreter
• ED staff was able to diagnose problem, communicate with patient and successfully resolve immediate health issue
• Patient was able to receive appropriate follow-up care from primary care physician
• Primary care staff contacts patient prior to her regularly scheduled appointments about need for an interpreter
Strategies to Support Patients Who Are Deaf• Ask the patient their preferred means of
communication• Provide a qualified and licensed sign language
interpreter at no cost to patient• Use the right seating arrangement for interpreter,
provider and patient• Do not talk while you are writing or reading• Use a normal voice tone• Use gestures • Reduce ambient noise • Avoid direct sunlight on your face so patient can
read your lips
The Challenge of Diabetes
• An older adult male with moderate intellectual disability was newly diagnosed with diabetes
• The medical staff reviewed diet and insulin dosage protocol with residential staff who were unaware of his family history of diabetes
• Patient did not understand dx and tx recommendations and was very anxious about needles
• He continued to have uncontrolled insulin levels and weight fluctuations
• The patient was seen multiple times in the ED for high blood sugar levels and agitation
Tackling the Challenges of Diabetes• A woman in her mid 30’s with moderate intellectual
disability is diagnosed with diabetes• She initially denies she has diabetes and struggles with
food restrictions and insulin• She receives developmentally appropriate nutrition
education and services and is able to learn new shopping and cooking strategies
• She has frequent appointments during the first year • She is able lose weight, increase her physical activity and
learn how to monitor her blood sugar• Her family and support staff are actively engaged in her
treatment (with her permission)
Strategies to Support a Patient with an Intellectual Disability• Treat adults as adults• Use precise words and simplified language• Give clear instructions and not too many at one time• Use developmentally appropriate educational resources
and visual props• Help the patient practice new behaviors in their real
environment• Repetition is needed to master new learning and behaviors• Check for understanding• May need more frequent and longer appointments• Engage family, direct support staff and important others
Women with Disabilities Do Become Pregnant• Woman in her 30’s with spinal cord injury is
pregnant and in her third trimester • She has not been weighed during her pregnancy• Her OB GYN received no education on women
with disabilities and pregnancy in medical school• The patient experiences a number of symptoms,
including multiple UTIs, edema, back pain and increasing fatigue
• The woman’s husband is extremely anxious about her health, how childbirth will be handled and what changes they will need to make at home
Another Woman’s Experience with Pregnancy and Childbirth• A woman with spinal cord injury in her early 30’s becomes
pregnant after extensive pre-conception planning
• She received recommended pre-natal care
• The ED and her primary care physician were able to accurately diagnosis and treat an episode of Autonomic Dysreflexia
• The patient and OB GYN developed specific birthing plans that were discussed with the hospital prior to her admission
• The patient and husband were able to make modifications to their home prior to the birth of their child
Too Many Barriers for a Patient who is Blind• The doctor's office is not on public transportation route so the patient
must coordinate appointments with her husband’s busy work schedule (and his loses pay)
• The reception area is very noisy, cluttered, and always arranged differently
• The medical intake forms are not available in alternate formats and the patient does not want to answer personal medical questions in the waiting room
• The patient must ask for her vital signs information (“How much do I weigh, what is my blood pressure?”)
• The staff are very anxious about her service animal and often say she cannot bring the animal into the treatment room
•
Patients With Vision Loss or Blindness• Always identify yourself and others in the room• When conversing say the name of the person to whom
you are speaking• Speak in a normal voice tone and say when you are
moving from place to place • Don’t leave without saying you are leaving• When offering directions use specifics, such as “left 100
ft.” or “clock cues”• NEVER pet or distract a working service animal or
canine companion• Provide a private/confidential area for information
gathering
Provisions of the ACA Important to People with Disabilities • Prohibits discrimination against people due to
disabilities or other pre-existing conditions• Eliminates annual and lifetime caps in private
insurance policies• Limits on cost sharing• Expands home and community based services
to help make it easier for people to live at home and participate in their communities
• Phases out the “donut” hole gap in prescription drug coverage under Medicare by 2020
ACA and Access to Quality Care
• Training of physicians, dentists, and allied health professionals on treating persons with disabilities
• Requires CMS to collect data on people with disabilities’ access to primary care services and the level to which primary care service providers have been trained on disability issues
• Prevention programs are to include a focus on individuals with disabilities
Utilize Lessons Learned from Providing Care to other Underserved Populations
• Comply with accessibility laws & principles of universal design
• Provide staff training on serving persons with a disability• Implement policies and best practices that support
culturally and linguistically competent services for persons with disabilities
• Provide health information and education materials in various formats (large print, audio, etc.)
• Purchase accessible equipment - lifts, scales, exam tables; include items in budget
• Use quality improvement planning to address the needs of persons with disabilities
• Plan for incremental changes
Next Steps
• Identify who will support your efforts to promote accessible healthcare services for persons with disabilities
• Identify 1 challenge you may face
• Identify 2 resources you have to offer your practice and community
• Where do you want to be 6 months?
• How can NCODH assist you in improving access?
Resources• US Dept. of Justice • Americans with Disabilities Act: access to
medical care for individuals with mobility disabilities, www.ada.gov/medcare_mobility_ta/medcare_ta.pdf
• www.ada.gov
• June Issacson Kailes, Disability Policy Consultant, http://www.jik.com/
