A Preview of Independence & Transition to Community Living: The
Role of Independent Living Centers
1998
by Bonnie O'Day
Editor's Note
In summer 1993, ILRU initiated a study of how centers could assist consumers
to move from nursing homes and into the community. We asked Bonnie O'Day
to take the lead in conducting this important study, which consisted of
- identifying centers currently providing such transitional services,
- reviewing the literature and legislation and convening a focus group
of center
directors and service delivery staff experienced in providing assistance
in this area,
- selecting and conducting in-depth interviews with staff of centers
with substantial involvement in assisting consumers to move out of nursing
homes,
- and writing a report which summarizes her findings and presents a
set of
recommendations for increasing services to this group of people, whom
our friends at ADAPT would call our incarcerated brothers and sisters.
We are taking this opportunity to give you a preview of findings from
the study while the monograph is being printed. This month's preview features
background information on why centers should make assistance to people
living in nursing homes a centers-wide priority. Next month, we will preview
the portion of the report addressing recommendations for increasing transition
to community living services.
Background
Since the beginning of the disability rights movement, a major thrust
of independent living centers has been to enable individuals with significant
disabilities to leave nursing homes and to live independently in the community.
Significant gains have been made in closing state institutions, and in
many locations, nursing-home placement is no longer seen as the only option.
Currently, about 80 percent of elders who have some type of disability
are living in the community. Over two-thirds of these individuals live
in single family houses and over one-third live with a spouse (Leutz,
Capitman, MacAdam, & Abrahams, 1992).
Nursing Home Demographics
On the other hand, both data reported in the literature as well as anecdotal
evidence suggest that approximately 1.9 million people of working age
and older still live in long-term care facilities and nursing homes. The
Institutional Population component of the 1987 National Medical Expenditure
Survey found roughly 231,000 users of nursing homes who are under age
65, representing 10.3 percent of the total nursing home population. The
number of male and female nursing home residents reflects the distribution
of the general population in contrast to residents 65 and older, where
women constitute the vast majority (71.8%) of nursing home residents.
This survey also reveals that younger nursing home residents (between
the ages of 18 and 55) are predominantly single or divorced (about 83%)
and contain a higher percentage of blacks than are represented in the
larger community (20% as compared with 11.8%). More than 36 percent of
nursing home residents in this age group have disorders of the central
nervous system, such as cerebral palsy, multiple sclerosis, paralysis,
or epilepsy. Over 34 percent are diagnosed with psychoses, including organic
brain disorders, 33.9 percent have nonpsychotic mental disorders, and
23.5 percent are classified as mentally retarded (Lair, 1992).
About 100,000 people still live in intermediate care facilities for the
mentally retarded (ICF/MR)-- institutions with more than 16 residents.
About 38,000 people with mental retardation or developmental disabilities
(MR/DD) live in Medicaid-financed nursing facilities, approximately the
same number as in 1977 (Mangan, Lakin, & Prouty, 1995).
Not surprisingly, most residents come to the nursing home from another
facility. Only about one-third of nursing home users between the ages
of 18 and 54 move from independence in the community to the nursing home.
About 12 percent come from retirement centers, group or boarding homes,
or the street. The rest come from hospitals, other nursing homes, state
institutions, or other health care facilities. On average, the length
of stay in a nursing home for this age group is approximately 6.2 years.
A shocking 20 percent of residents aged 18 to 54 have been institutionalized
for ten years or more (National Medical Expenditure Survey, 1992).
Cost: Nursing Homes Vs. Community Living
Institutionalization is the most expensive form of long-term care offered
to elderly and disabled Americans. Annual institutional costs per person
range from $30,000 to $60,000, while the annual costs of in-home services
are estimated by Nosek and Howland (1993) to be $8,000 to $15,000 and
by ADAPT (1995) to be about $27,000 for people who use 24-hour care. Even
people who require assistance from a ventilator and need intensive in-home
services can live more cheaply in the community. According to one study
of 20 ventilator-dependent individuals, institutional costs were 274 to
304 % greater than community placement. Daily institutional costs were
$648 to $719 per day, while community placement costs, including personal
assistance services (PAS), equipment, transportation, prescriptions, SSI,
and rent supplements were $134 to $312 per day (Bach, Intintola, Alba,
& Holland, 1992).
The relatively poor cost-effectiveness of nursing homes as compared to
community living is demonstrated by the following real-life situations
of people with significant disabilities:
- A married couple living in a nursing home was unable to move into
the community simply because funds to make an apartment wheelchair accessible
were not available. For lack of a one-time investment of a few thousand
dollars, the couple was forced to live in a dependent situation which
cost the state tens of thousands of dollars annually.
- An elderly man was placed in a nursing home because he was unable
to cook meals for himself. This was his only functional limitation (Nosek
& Howland, 1993).
Despite this overwhelming evidence of cost savings, federal financial
arrangements encourage the use of nursing homes when other types of care
may be more appropriate. Medicaid covers nursing home costs, but may not
pay for PAS, homemaker/chore services, home modification for accessibility,
or adaptive equipment. These policies unnecessarily force people into
skilled care facilities purely for financial reasons. As Leutz states,
. . . resources are too often mis-allocated toward expensive tertiary
care and life support to the neglect of primary prevention, public
health, and basic social supports. Medicare will spend small fortunes
for aggressive acute care for 85-year-olds; Medicaid will do the same
to keep an individual alive for years in a vegetative state; but help
is unlikely to be available for an overburdened, aging woman struggling
to lift her disabled husband from a bath. Our public and private insurance
systems pay for expensive machinery that substitutes for failing kidneys,
lungs and hearts, but they are not yet ready to pay for a simple service
that may substitute for a failing or absent family caregiver. Leutz,
et al, 1992
Numerous studies also demonstrate the detrimental effects of nursing
homes on individual well-being. Physical and mental functioning may deteriorate
(Avorn & Langer, 1982), and dependency tends to increase. One study
examined 341 nursing home residents with developmental disabilities to
compare changes in functioning among individuals who moved into the community
with those who stayed in the nursing home. This two-year study found that
residents who moved into community settings experienced significant health
benefits, while those who remained in nursing homes experienced deterioration
or no significant changes. Decreases in anemia, obesity, overall health
problems, number of days of hospitalization, and mobility limitations
were observed among those who left the nursing home. Persons who remained
in the nursing home experienced increased speech impairment, circulation
disorders, and level of adaptive functioning (Heller, Factor, & Hahn,
1995).
Most people strongly prefer to stay at home rather than enter a nursing
home or other form of institutional care (Zedlewski, Barnes, Burt, McBride,
& Meyer, 1989). Nursing home or institutionalized living that allows
little opportunity for self-determination has been shown to have a strong
negative impact on life satisfaction (Vallerand, O'Conner, & Blais,
1989). But, moving from nursing homes or remaining in the community after
onset of a disability is a formidable challenge requiring considerable
planning, problem-solving, and emotional fortitude. People who wish to
move from institutions into the community face a wide array of obstacles,
including lack of PAS, social stigma, inaccessible housing, lack of independent
living skills, few financial resources to make the move, and inadequate
transportation. Inadequacy of support systems in place to allow for comfortable
and safe community living makes the move impossible for many citizens.
However, people who have made a successful transition from residential
care and nursing homes to independent community living express a sense
of greater well-being, have lower costs associated with care, and are
more involved in community activities than those who remain nursing home
residents (Nosek & Howland, 1993).
The Role of Centers
As increasing numbers of people with significant disabilities live independently
and as more institutions are closed in favor of community options, some
centers have turned away from persons still in nursing homes or institutions.
One reason for this trend might be that only three percent of people with
spinal cord injuries, the original independent living constituency, are
placed in nursing homes today; the percentage was much higher in the past
(Berkowitz, Harvey, Greene, & Wilson, 1992). Today's nursing home
population is more severely disabled than in the past and requires a broader
and more complex array of services and supports to live independently.
Another problem is that most residents of large, state institutions have
mental retardation--a disability group that historically has been underserved
by independent living centers. But, as Jerry O'Bryan, board member and
former peer counselor for the Endependence Center of Hampton Roads explains,
"Nursing home residents have just as much right to center services
as people already living in the community. People in nursing homes tend
to have the least financial resources of anyone in our society; many have
no family or social supports. They need the gamut of independent living
services, especially advocacy. If centers are not serving this population,
we are not truly living up to our mission." The testimony of Harry
Richardson brings the dependence, degradation, and frustration of institutional
life into clear focus:
I am 67 years old and have cerebral palsy and have been in an institution
since I was ten years old. . . . My wish to leave the nursing home
is finally coming true. I am going to get out of the nursing home
in a week. I wish they would close the nursing home. I have seen with
my own eyes many things. Someone at the nursing home recently asked
for help, and the staff said they were busy. . . . Sometimes the staff
won't get me out of bed, and won't help when I have passes to leave
the home. A driver wouldn't take me to a movie . . . I still have
problems, and sometimes I have to wait ten minutes for an elevator,
[and I miss my ride] because the staff won't take me on time. I don't
think that it is right that I have to pay [for my transportation],
even when I miss my rides. I always have to wait until they take me.
. . . This won't happen when I have my own attendant. In the nursing
home, there is no freedom for me. There are no services available
for people like me. I sued the state on my behalf and others. Now,
I will have my own apartment and my own attendant, and my dream is
finally coming true. There are many people, including many not as
disabled as myself, who are still waiting for attendant care services.
This is why we need home and community based attendant care services
so that people don't have to spend their whole lives in a nursing
home--so people can have a choice of living. Home and community based
care will allow us to attain and have personal freedom. It will mean
that people in nursing homes will have an opportunity to make their
dreams a reality. National Council on Disability, 1994
Independent living centers can be a vital link for people wanting to
move from long-term rehabilitation facilities into community settings.
By providing information and referral about resources in the community,
peer counseling, independent living skills training, individual and systems
advocacy, and assistance in obtaining accessible housing and PAS, centers
enable hundreds of individuals with severe disabilities to leave custodial
care for independence in the community every year. Although centers have
a long history of successful advocacy and service in this area, little
information is available about the extent to which centers assist people
in making the move and about what services contribute to a successful
transition to community living. Surprisingly, "how-to" information
to assist centers in establishing successful transitional efforts is scarce.
As part of its research and training center, the Independent Living Research
Utilization (ILRU) Program initiated a study of the "state of the
art" of center-based transitional services to support community entry
for people with significant disabilities. The purposes of this project
were:
- to obtain information on exemplary approaches being used by centers
to assist people with disabilities in making the transition from long-term
rehabilitation facilities to community living, and
- to provide centers around the country with appropriate information
and technical assistance to assist them in providing transitional services
in an effective manner.
A major focus of the project was to determine the extent to which programs
exist to help people with significant disabilities make a transition into
the community. The outcome was a monograph, which highlights the "best
practices" of six centers and examines policy barriers that inhibit
community living.
|