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EV
A NATIONAL PROFILE OF INDEPENDENT LIVING PROGRAMS
FOR PEOPLE WITH DISABILITIES
COPYRIGHT 1984
ILRU PROJECT
Work supported in part by C.S. Mott Foundation
INTRODUCTION
In 1983-1984 the Independent Living Research Utilization Project conducted
an extensive survey of the independent living programs in the United States
for the purpose of updating ILRU's informational data base, and documenting
the continued vigorous growth of the independent living movement in this
country. The information collected included demographic items, staffing pat-
terns, utilization of funding resources, services provided and
types of people using these services.
DEFINITION OF INDEPENDENT LIVING PROGRAM
The survey was sent to all programs listed in ILRU's DIRECTORY OF
INDEPENDENT LIVING PROGRAMS. These programs can be catagorized into four
groups: Independent Living Centers, which are characterized by consumer
control, a wide range of services, and are primarily community-based, non-
residential organizations; Independent Living Transitional Programs, charact-
erized by short-term training in specific independent living skills with
housing arrangements usually provided during the training; Independent Living
Residential Programs, which have a primary focus on long-term housing needs
and often transportation for the residents in the program; and Independent
Living Service Providers, which offer specific services useful for living
independently although they are not themselves independent living programs.
SOURCE OF THE MAILING LIST
The DIRECTORY has been compiled since 1977 from several sources: state
vocational rehabilitation agencies, lists of ILPs funded under the federal
independent living authority (Title VII of PL 93-112, as amended), and
personal contacts with an extensive peer network in the movement. The final
mailing list included 281 addresses.
PROCEDURES
Data collection was conducted by mailing a three-page survey to all listed
programs in the DIRECTORY during November 1983. A follow-up letter was sent
to non-responding organizations in January, 1984. The survey was completed
in February 1984 with a total response of 162 programs. This is considered a
good response rate since many of the original list of 281 programs either no
longer exist or are not truly consumer-controlled, community-based
independent living programs at all. Seven of the 162 programs which
responded are not included in the statistical analysis because of their late
response. Therefore, all statistics are based on 155 survey returns. It is
estimated that this sample represents roughly 60% of the total number of ILPs
operating today. Based on ILRU's experience in the field, this sample appears
to be a very representative sample of the ILPs operating in the U.S. today.
OVERALL RESULTS
TABLE 1
NATIONAL SUMMARY DATA ON
ILP TYPES AS OF
FEBRUARY 1984
TYPE
NUMBER
PERCENT
TOTAL
ILC
109
70%
155*
ILRP
13
8%
ILTP
14
9%
ILSP
21
13%
# The following programs have aspects characteristic of more than one program
type:
Austin Resource Center for Independent Living, Austin TX
Cedar Street Living Center, Blackfoot ID
Center for Independent Living of Greater Bridgeport, Bridgeport CT
Courage Residence, Minneapolis MN
Independent Living Program, Seattle WA
Metrolina Independent Living Program, Charlotte NC
Prairie Freedom Center for Disabled Independence, Sioux Falls SD
Rehabilitation Institute Center for Independent Living, Detroit MI
Roosevelt Rehabilitation Independent Living Skills Training, Warm Springs GA
Summit Independent Living Center, Missoula MT
Woodrow Wilson Center for Independent Living, Fishersville VA
These progrmas have been classified according to the program type they most
resemble.
Table 1 figures indicate:
o Well over half (70%) of the ILPs are consumer controlled, community based
independent living centers. This is a significant increase from the 1977
survey which showed only 12 of 52 programs polled to be ILCs.
o Only 8% of the programs are primarily residential, as opposed to 15 of the
52 programs in the 1977 survey. This possibly indicates that disabled
consumers are finding more diverse methods of meeting their housing needs and
are no longer directly requiring residential services from the ILPs.
GROWTH IN NUMBER OF ILPs
TABLE 2
NUMBER OF ILPS OPEN PER YEAR
(96% reporting)
YEAR
TOTAL
ILC
ILRP
ILTP
ILSP
(Cumulative Number/Number new programs added that year)
1970
or
before
5/5
0/0
1/1
2/2
2/2
1971
6/1
0/0
1/0
3/1
2/0
1972
9/3
3/3
1/0
3/0
2/0
1973
10/1
3/0
2/1
3/0
2/0
1974
13/3
5/2
2/0
3/0
3/1
1975
17/4
7/2
2/0
3/0
5/2
1976
27/10
15/8
3/1
4/1
5/0
1977
33/6
19/4
3/0
4/0
7/2
1978
41/8
25/6
4/1
4/0
8/1
1979
48/7
29/4
6/2
4/0
9/1
1980
88/40
59/30
9/3
5/1
15/6
1981
120/32
83/24
11/2
7/2
19/4
1982
134/14
96/13
11/0
8/1
19/0
1983
144/10
105/9
11/0
9/1
19/0
1984
146/2
106/1
12/1
9/0
19/0
FIGURE 1
NUMBER OF NEW PROGRAMS PER YEAR
40
35
30
25
20
15
10
5
0
<-170
75
80
'84
o Data indicate that the years of highest growth for the ILCs were 1980-1981,
when federal funding through Title VII, Part B became widely available.
TYPE OF STAFF
TABLE 3
STAFF BREAKDOWN
(in average percentages)
%
%
%
Paid
Volunteer
Disabled
Non-disabled
Board of Directors
1%
99%
49%
51%
Exec. Director
99%
1%
50%
50%
Peer Counselors
40%
60%
84%
16%
IL Skills Trainers
81%
19%
35%
65%
Administrative Staff
86%
14%
39%
61%
Other
67%
33%
44%
56%
Both the board of directors and the executive director show a 50/50 split
disabled/non-disabled catagories.
The boards are voluntary, while directors are paid.
Over half (60%) of the peer counselors are volunteer and most (84%) are
disabled.
Most IL skills trainers are paid (81%) and non-disabled (65%).
Most administrative staff are also paid (86%) and non-disabled (61%
GEOGRAPHICAL DISTRIBUTION
TABLE 4
AVERAGE PERCENTAGE OF PERSONS SERVED ACCORDING TO LOCATION
Immediate community
70%
Rural areas
15%
Other cities in state
13%
Outside state
2%
TABLE 5
DISTRIBUTION OF CENTERS BY STATE
STATE
TOTAL
ILC
ILTP
ILRP
ILSP
(dir) (reg) (pop)
# CTRS/# PEOPLE SERVED PER MONTH)
REGION 1
CT
3
2/168
2/168
ME
6
3/565
2/550
1/15
MA
14
9/1901
7/1143
1/20
1/208
1/30
NH
1
0
RI
3
2/440
1/300
1/140
VT
2
1/230
1/230
REGION 2
NJ
3
2/280
2/280
NY
25
10/2036
8/1114
1/754
1/168
REGION 3
DE
2
2/125
1/50
1/75
MD
1
0
PA
6
4/775
2/515
2/260
VA
9
5/398
2/298
3/100
WV
3
3/150
3/150
DC
1
1/138
1/138
REGION 4
AL
1
0
FL
14
4/865
3/615
1/250
GA
5
3/608
2/600
1/8
KY
5
0
MS
2
0
NC
1
1/20
1/20
SC
1
0
TN
1
1/45
1/45
REGION 5
IL
6
5/2222
2/130
2/92
1/2000
IN
3
1/54
1/54
MI
16
12/837
8/721
2/84
2/32
MN
8
6/1345
4/345
1/1000
OH
5
5/275
2/150
2/170
1/45
WI
6
6/425
5/325
1/100
REGION 6
AR
2
2/395
1/189
1/206
LA
4
1/105
1/105
NM
1
1/140
1/140
OK
2
2/121
2/121
TX
14
5/714
4/689
1/25
REGION 7
IA
3
1/100
1/100
KS
6
6/454
4/389
2/65
MO
7
3/117
3/117
NE
4
4/710
4/710
REGION 8
CO
6
4/2400
3/2265
1/135
MT
3
3/356
2/331
1/25
ND
2
0
SD
3
1/73
1/73
UT
1
0
WY
2
2/57
1/2
1/55
REGION 9
AZ
3
2/100
1/100
1
CA
28
14/2179
12/2166
2/13
HI 5
1/94
1/94
NV
2
2/142
2/142
REGION 10
AK
2
1/101
1/101
ID
5
4/117
1/30
1/35
2/52
OR
6
4/241
3/165
1/76
WA
14
10/1096
5/959
3/72
2/65
o California has the largest number of ILPs (14 survey returns, 28 listed in
the directory of ILPS), followed by New York (10 from survey, 25 in
directory), Michigan (12 from survey, 15 from directory) and Washington (10
from survey, 14 from directory).
o Colorado serves the largest number of people (2400), however 2,005 are
strictly general information and referral calls. Illinois has 2,222 which
includes a school service program for 2,000 people. of the states that have
programs serving the more typical IL needs, California is again first with
2179, followed by New York (2036) and Massachusetts (1901).
MAP SHOWING LOCATIONS OF
INDEPENDENT LIVING PROGRAMS (ILPs) IN THE UNITED STATES
DISTRIBUTION OF FUNDING RESOURCES
TABLE 6
FUNDING SOURCES AND BUDGET PERCENTAGE AVERAGED FOR ALL PROGRAMS
Federal/State funds
79%
Local funds (city, county)
4%
Foundations/Private agencies
8%
Funds generated (fees, memberships) / Other
9%
o Federal and state taxes, most generally Title VII funding and state voca-
tional rehabilitation agency funding, comprise the major funding resource for
Independent Living Programs.
TABLE 7
COMPARISON OF FUNDING RESOURCES AND AGE OF PROGRAM
PROG.
1% STATE/
1% LOCAL
1% PRIVATE
1% SELF-
AGE (in yrs)
|FED. FUNDS
FUNDS
FUNDS
|GEN. FUNDS
15 or more
148
111
120
122
10-15
151
13
[29
117
5-10
166
18
114
112
<5
185
13
|8
15
o
As programs mature, funding sources apparently grow more diverse with a
trend toward greater reliance on self-generated funds and less reliance upon
tax dollars.
TABLE 8
COMPARISON OF BUDGET SIZE AND AGE OF PROGRAM
AGE
|<100,000 100,000- I 400,000- 700,000- |>1,000,000
(in yrs.)
I
per yr.
400,000 700,000 11,000,000
>15
0%
33%
0%
33%
33%
10-15
0%
43%
14%
43%
0%
5-10
9%
45%
18%
12%
15%
<5
24%
69%
6%
1%
0%
o
Younger programs tend to have smaller budgets, which would be expected
since they are also more dependent on a single (government) source for their
support.
TABLE 9
COMPARISON OF NUMBER OF SERVICES OFFERED BY AGE OF PROGRAM
AGE
0-2
3-5
6-8
9-12
(in yrs.)
SVCS
SVCS
SVCS
SVCS
>15
0%
33%
67%
0%
10-15
40%
40%
10%
10%
5-10
20%
17%
33%
27%
<5
10%
26%
45%
23%
o Older programs have more liklihood of offering a few specialized services
while younger programs tend to offer a greater variety of services.
TABLE 10
COMPARISON OF NUMBER OF DISABILITY TYPES SERVED BY PROGRAM AGE
AGE
0-2
3-5
6-8
9-11
(in yrs.)
TYPES
TYPES
TYPES
TYPES
>15
50%
25%
25%
0%
10-15
50%
0%
17%
33%
5-10
24%
16%
28%
32%
<5
12%
16%
26%
46%
o
Older programs tend to serve a more specialized disability population,
while younger programs tend to serve a greater spread of persons with various
disabilities.
CHARACTERISTICS OF PERSONS SERVED
TABLE 11
AGE DISTRIBUTION
AGE
PERCENTAGE
0-18 years
8%
19-30 years
37%
31-64 years
40%
65 and over
15%
o This distribution reflects the fact that there are numerous social service
programs for school-age and retired citizens, so the most numerous population
in the independent living programs are the working age people.
TABLE 12
DISTRIBUTION BY DISABILITY
(120 programs reported these statistics)
DISABILITY
UNITS OF
I
% OF TOTAL
# OF PRGMS
% OF TOTAL
TYPE
SERVICE
SERVICES
OFFERING
# OF PRGMS
PROVIDED
PROVIDED
SERVICES
Spinal Cord Injury
3443
18%
95
79%
Cerebral Palsy
1836
10%
86
72%
Brain Injury
981
5%
83
69%
Amputee
394
2%
65
54%
Stroke
995
5%
76
63%
Blind
2996
16%
94
78%
Deaf
1294
7%
76
63%
Deaf-Blind
182
1%
28
23%
Mental Illness
1414
7%
70
58%
Mental Retardation
2267
12%
70
58%
Other#
3422
18%
81
68%
Total
19,224
#
Included under other are the following:
Multiple disabilities, Arthritis, Aged, Alcoholics (or other
drug
addictions), Chronic medical conditions (including cancer, heart disease,
respiratory, diabetes, kidney dysfunction), DD, Dwarfism, Dyslexia, Epilepsy,
Incontinence, LD, MD, Neuromuscular (including ALS, Frederich's ataxia, spina
bifida, MS, polio), Orthopedic, Speech impairment.
o Spinal cord injured persons have the highest representation by any single
disability group (18%), followed by blind (16%), mental retardation (12%),
and cerebral palsy (10%).
o A high percentage (18%) of consumers have various other disabilities,
showing a fairly unviersal usage of the services offered by independent
living programs.
PERCENTAGE OF PROGRAMS WHICH ARE RESTRICTED BY DISABILITY TYPE: 36%
o The most common restrictions seen in programs are:
physical disabilites only (no MI or MR), blind, mentally retarded (usually
multiply handicapped), or mentally ill.
TABLE 13
SERVICES OFFERED
SERVICES
PERCENTAGE OF PROGRAMS
AVERAGE PERCENTAGE
OFFERING THE SERVICE OF PERSONS USING SERVICE
Housing assistance
82%
18%
Peer counseling
79%
14%
IL skills training
77%
16%
Attendant assistance
67%
9%
Financial counseling
58%
7%
Family counseling
46%
3%
Other I & R
44%
11%
Reader/Interpreter
referral
43%
3%
Vocational counseling
42%
5%
Other counseling
39%
9%
Vocational training
23%
3%
Vocational placement
23%
3%
Client advocacy
92%
Systems advocacy
85%
Newsletter
74%
Media coverage
74%
Annual report
74%
Speaker's bureau
70%
Social/ Recreational activities
68%
Transportation
63%
Residential service
33%
Wheelchair repair
24%
Medical treatment or
Sheltered workshop or
Protective supervision
15%
o The services most widely offered are: Client advocacy (individual help for
specific problems) with 92% of the programs offering that service, followed
by systems advocacy ( (i.e. working in the community for accessible housing,
transportation, etc.) 85%, with housing assistance (82%) and peer counseling
(79%) in third and fourth place respectively.
o The most used services (Table 13) are: Housing assistance (18%),
independent living skills training (16%), and peer counseling (14%).
In addition to the data already reported, the national independent living
survey also listed two open-ended essay questions. The first dealt with the
usefulness of services, while the second asked about methods of program eval-
uation. The following is a compilation of those responses. The number in
front of each catagory designates the number of programs listing that as a
useful service.
DESCRIPTION OF MOST USEFUL SERVICES
IN INDEPENDENT LIVING PROGRAMS
ADAPTATIONS
14 Technical assistance and architectural/environmental consultation
13 Adaptive equipment, homemaker aids, mobility aids, W/C repair
ADVOCACY
31 Individual advocacy
20 Community advocacy
1 Legal assistance
ATTENDANTS
26 Attendant/aid referral
26 Attendant care services
3 Attendant management training
COMMUNICATIONS
28 General information and referral
4. Relay calls
3 Interpreter referral
2 American sign language training
1 Language translation and interpretation
1 Communication aids
1 Newsletter
1 Community outreach--consumer identification
COUNSELING
53 Peer counseling, role modeling, informal peer support and advice
29 Benefits and community resources advisement
23 Adjustment counseling--mental health, individual adjustment, behavioral
intervention, problem-solving, psycho-social groups
9 General counseling
4 Family counseling
EDUCATION
79 Independent living skills training--ADL skills, basic communication,
orientation and mobility, homemaking skills, medication training, medical
self-reliance, budgeting, assertiveness training, time management, monitoring
4 Continuing education including topical workshops
3 Participant volunteer training activities
3 Case management coordination
1 Educational assistance
1 Independent living evaluation
1 Training for spouses, parents, and institutional staff
HEALTH CARE
3 Home health care
1 Medical restoration
1 High quality community based health care
1 Support services--speech, physcial therapy, etc.
HOUSING
54 Housing assistance
9 Transitional living arrangements
7 Residential care/housing
SOCIALIZATION/RECREATION
16 Socialization/recreation including sports programs
1 Adult day program
TRANSPORTATION
27 Transportation service
2 Transportation referral
2 Driver's education
1 Vehicle modification
VOCATIONAL
9 Vocational counsel
8 Vocational and prevocational training
8 Vocational placement and job development
1 Vocational support services
o The services most often described as being the most useful are:
1. Independent living skills training (79 responses)
2. Housing (54 responses)
3. Peer counseling (53 responses)
4. Advocacy (52 responses, the combined total of individual advocacy (31),
community advocacy (20) and legal assistance (1)
METHODS USED TO EVALUATE PROGRAM EFFECTIVENESS
CONSUMER/CLIENT BASED
53 Client satisfaction survey
25 Individual follow up
2 Peer evaluation
2 Improved coping skills (determined from client's response)
2 Client input to staff evaluations
1 Progress as monitored by clients
PROGRAM/GOAL BASED
16 Evaluate goal completion
13 Skill improvements (including dwelling, transportation, education, self-
care, driving, leisure, medical self-reliance, job placements, involvement in
community activities)
10 Needs assessment (pre and post)
6 Management by objectives system
5 IPPs
3 Program evaluation system
3 Client service data/Service evaluation form
2 Quality assurance program
1 Client progress eval based on W.H.O. Classification of Impairment,
Disability and Handicap
1 Personal fitness profiles
1 Workshop evaluation form
1 Results
1 Psychological testing
1 Client testing and assessment
GENERAL REPORT FORMS/STANDARDIZED EVALUATIONS
8 Lawrence R & T Center evaluation form
7 Case management review
2 Internal evaluation (monthly or quarterly)
2
Performance eval developed by Walker and associates
1 West Virginia R&T Center evaluation form
1 University of Washington (Deborah Wilkerson) IL evaluation project
1 University of Arkansas (Rick Rossler) client outcome system
1 Local university social work department evaluation form
1 Weekly progress notes
CHANGES MADE
4 Change in living situation
2 Number of barriers removed in community, number of accessible housing units
identified
2 Work adjustment (productivity)
STAFF EVALUATIONS
15 Evaluation of program by board and administration
13 Staff report forms forms (monthly, quarterly, yearly, at termination of
service)
5 Input from consumer advisory council
5 Staff development meetings
4 Staff monitoring, performance review
4 Staff satisfaction
4 Staff recommendations
1 Annual review by executive director
1 Training
STATISTICS
13 Numbers served
9 Statistical analysis of services provided
2 Unit cost
2 Length of time in ILS program
1 Effectiveness and efficiency measures
1 In-out referral ratio
1 Length of time out of hospital
FEEDBACK FROM OUTSIDE AGENCIES, OTHERS
23 Outside agency evals/reports to agencies/monitoring by funders
16 State DVR collection system
7 Community feedback (incl. PR, media, support funds)
4 Independent/CPA audits
2 Health care professional feedback
2 Family feedback
2 Referral sources
2 CARF audit
1 HUD forms and regulations
4 In process of developing system
o The most popular evaluation systems are:
1. Client satisfaction survey (53)
2. Individual follow-up (25)
3. Outside agency/funder's evaluations (23)
O Comparing the results of Table 13 with the essay question which asked which
programs were most beneficial, similar results were obtained. Seventy-nine
programs answered that independent living skills training was the most
beneficial service they offered, and 16% of the clients used it. Housing
assistance and peer counseling were also popular services with 54 and 53
programs responding that these were beneficial, while 18% and 14% of the
clients used them. The top three services were the same, in both catagories:
number of people served and usefulness of service.
SUMMARY
The national independent living program survey results indicate that the
programs are working with people who have a wide range of disabilities and
that the programs offer a number of services which appear to be consistent
with the reported needs of the disabled consumers. As programs mature,
the
services vary, and many programs have services which were not adequately cap-
tured by this survey but were added as supplemental material. This again
indicates the importance of consumer involvement in making their programs
flexible enough to continue to meet the changing needs of those who benefit
from the services.
As the independent living movement continues to grow, the programs are
growing too. It would appear that a very healthy trend is occurring.
# Examples include: Rural branch operations set up by urban programs, innova-
tive personal care attendant programs, and strong community advocacy programs.