Download `Emerging Disability`?

Emergent Disabilities in the
United States: New Challenges
for Rehabilitation and Public
Health
Thilo Kroll, PhD; Melissa J McNeil, MS, MSW;
Susan Palsbo, PhD
National Rehabilitation Hospital
Center for Health and Disability Research
Washington DC
Funding by NIDDR: #H133A990013-01
What Is An ‘Emerging Disability’?
Changes in the epidemiology and etiology will
cause certain conditions to emerge as “new or
newly recognized disabilities” creating a new
universe of disabilities
The “New” Universe of Disability
Sociological and Environmental Factors
 Disparities in access to health care Disability in highly prevalent
conditions (e.g. asthma, diabetes) resulting from lack of access to timely
and appropriate prevention/rehab services including self-management
 Aging/sociodemographic changes of the population leads to increase
in the prevalence of disabilities (e.g. arthritis, stroke, cardiovascular
problems, cancer-related disabilities)
 Changes in the workplace technology paired with unequal access to
assistive equipment increase prevalence of repetitive motion syndromes
(e.g. strain injuries such as carpal tunnel syndrome)
 Expanded conceptual understanding and awareness of 'disability' (a
multidimensional model of disability) broadens the ‘universe’ of disability
The “New” Universe of Disability
Medical Care Factors
 New set of primary conditions (e.g. neurological consequences of
HIV)
 Ineffective long-term management of primary conditions (e.g.
permanently reduced lung function in asthma; neuropathies
cardiovascular complications in diabetes)
 Improved emergency care (e.g. SCI/TBI) for conditions that were
once fatal.
 Multimorbidities following survival of primary condition (e.g. cancer,
heart disease, arthritis)
 Newly recognized disabling sequelae resulting from successfully
treated primary conditions (e.g. secondary malignant tumors)
Who Will Be Impacted by
Emerging Disabilities?
Emergent disabilities will affect…
•
People whose survival is more likely to be followed by long-term complications
requiring rehabilitation
•
Predominantly ethnic/racial minorities whose number is growing
•
The working age poor with inadequate or no insurance
•
Individuals with limited health and disability literacy
•
People who struggle to understand and navigate the health care system
Demand and Supply
Market perceptions
Medical complexity and shortened treatment duration
–
“…inpatient hospital days continue to shrink, and as a result, in our transitional rehab
unit, we’re seeing people that are increasingly medical complex, have many more
medical needs and are much more at risk for re-hospitalization than they have been
in the past…” (Inpatient rehab provider)
Premature rehabilitation
–
“They discharge people now too soon from the hospitals, so if there is an inpatient
rehabilitation place they get them so much sicker and in worse shape…they can’t do
rehabilitation. But the days are up, and the rehab hospitals know that the insurance is
running out, and they want to get them out of there…’(consumer advocate)
Provider shortage
–
“…it has caused a severe shortage of rehab providers that are willing to serve longterm care and skilled nursing facilities. The change was so quick and the financial
impact so significant that we lost a lot of providers…” (Home healthcare provider)
Population grows at different speed
Percent change in population growth between 1990 and 2000
Native Hawaiian/Other
Pacific Islander
9.3
Asian
48.3
American Indian/Alaska
Native
26.4
Hispanic (of any race)
57.9
Black/African American
15.6
5.9
White
Total Population
13.2
0
10
20
30
40
Percent
Source: US Census 2000
50
60
70
Economic participation
Percent
Unemployment by gender, age and
disability
100.0%
90.0%
80.0%
70.0%
60.0%
50.0%
40.0%
30.0%
20.0%
10.0%
0.0%
With a disability
No disability
16 to 20
years :
21 to 64
years :
Men
16 to 20
years :
Age group
21 to 64
years :
Women
Universe: Civilian non-institutionalized population 5 years and over
Data Set: Census 2000 Supplementary Survey Summary Tables
Activity limitations in working age adults
Percent of individuals with any type of activity limitation due to chronic
conditions by age group; NHIS 1997
36.2
0-17 years
18- 64 years
65 years and older
50
13.8
Asthma Trends
http://www.cdc.gov/nceh/asthma/ataglance/images/trends.jpg
Violent Crimes
http://www.ojp.usdoj.gov/bjs/glance/tables/4meastab.htm
National estimates of nonfatal firearm-related
injuries in the United States, 1993-1997
45
40
35
Rate per 100,000
30
25
20
15
10
5
0
1993
1994
1995
Year
National estimated rates of nonfatal firearm-related injuries per 100,000 people in the United States, 19931997 (CDC, 1999
1996
1997
Etiology of SCI since 1990
Causes of SCI
• Vehicular crashes equal 38.5%
• Violence equals 24.9%
• Falls equal 21.8%
• Other causes equal 7.9%
• Sports' injuries equal 7.2%
http://www.spinalcord.uab.edu/show.asp?durki=25426
TBI incidence rate, risk factors, and causes.
•
5.3 million Americans are living today with a TBI-related disability.
•
The leading causes of TBI are motor vehicle crashes, violence, and falls
•
Each year more than 80,000 Americans survive a hospitalization for traumatic brain
injury but are discharged with TBI-related disabilities.
•
For persons of all ages, the risk of TBI among males is twice the risk among
females.
•
The risk of having a TBI is especially high among adolescents, young adults,
and people older than 75 years of age.
Estimated persons living with AIDS and Death by
Year and Sex
300,000
250,000
Count
200,000
male alive
female alive
male death
female death
150,000
100,000
50,000
0
1993
1994
1995
1996
Year
1997
1998
1999
Estimated number of adults/adolescents living with AIDS/Estimated deaths of persons with AIDS. Data from
CDC, HIV/AIDS Surveillance Report, 2000; 12(No. 1).
Diabetes Trends
http://www.cdc.gov/diabetes/statistics/survl99/chap2/fig2.gif
Role of Rehabilitation
• Linking primary, secondary, and tertiary prevention
• multidisciplinary approach
• provide assistance and treatment in response to physical,
social, psychological and economical needs
Barriers to realized access to health maintenance
and rehabilitation
Environmental barriers
•
•
•
•
transportation
urban vs. rural
qualified provider shortage
access to care facilities
Sociocultural barriers
•
•
•
•
•
linguistic
(health) and disability literacy/management knowledge
support network
lack of culturally competent providers
alternative, indigenous health beliefs and intervention models
Economical barriers
•
•
insurance
income
Individual barrier
•
•
•
•
gender/role function
cognitive, emotional,
physical barriers
Co-morbidities
Some principal barriers on the supply side
•
Loss of specialist, especially social workers
•
Decline in length of stay in acute care and inpatient rehab
•
Greater medical complexity in transitional rehab
•
Discharge into nursing homes that cannot provide appropriate
rehabilitation services
•
Severely disabled (e.g. TBI) do not receive full spectrum of services
due to cost containment
•
Cost shifting from private to public payers
Implications
Research
•
•
Context-sensitive definition of operational characteristics of cultural
disability literacy for healthcare providers and insurers
Improved understanding of the social context of disability and health
care delivery
Health Care Delivery
•
•
Improved cultural disability literacy among providers, health plans,
purchasers
Improved minority access to behavioral health, secondary prevention
and health promotion interventions
Health Policy
•
•
Redefined concept of medical necessity/maintenance (need to replace
the acute care model)
Knowledge transfer from innovative programs in the private insurance
sector (e.g. community partnership) to the public sector with more limited
resources
Further reading on Emerging Disabilities
• Health and Disability
Issue Briefs: Emerging
Disabilities Series
• Available at the
National Rehabilitation
Hospital Center for
Health and Disability
Research
• http://www.nrhchdr.org