Living Arrangements (CSLA)
California Department of Developmental Services
1600 9th Street
Sacramento, CA 95814
Allen, Shea & Associates
1780 Third Street
Napa, CA 94559
Claudia Bolton Forrest
In October 1990, Congress amended the Social Security Act, and added Section
1930 to Title XIX, thereby establishing the Community Supported Living Arrangements
(CSLA) program, as an initiative to provide supported living services to
Medicaid-eligible individuals with developmental disabilities. CSLA is one
funding stream for supported living, which is a set of ideas and practices
regarding a chance to live safely and well in a home of one's own (alone
or with others); respect for preferences and choice; a lifestyle that makes
sense to the person; as much self-reliance as possible; and receiving personalized
services and supports to make it happen. Since the early 1980s, several
states have used the Medicaid Home- and Community-Based (HCB) Services Waiver
to provide supported living services. CSLA, however, represents the first
official, federal recognition within the Medicaid program of supported living
as a funded service. Yet, unlike most Medicaid-funded services, CSLA (1)
was time-limited (sunsetting September 30, 1995); (2) funding was capped;
and (3) statewideness was not required. Because of the cap, states were
invited to submit applications. Twenty-seven did so, and eight states, including
California, were selected. In turn, California selected seven of its twenty-one
regional centers to participate in the pilot. (For readers who are not familiar
with the developmental services system in California, the Department of
Developmental Services sets policy and provides funding for regional centers
and state developmental centers. Twenty-one, nonprofit regional centers
have contracts with the state to offer service coordination to eligible
individuals and to fund community services not provided in any other way
through vendored providers. Area Boards are mandated by state law to monitor
the legal, civil and services rights of citizens who have developmental
No CSLA funds were expended in the first year (October 1, 1990 - September
30, 1991). States began using such funds to serve small number of people
during the second half of the following federal fiscal year (FFY). We mention
this time line to help in understanding the content of this report. Senate
Bill (S.B.) 1383 amended the Lanterman Act in several important respects,
taking effect January 1, 1993. (The Lanterman Act is California's basic,
authorizing legislation that defines developmental disabilities; establishes
regional centers; and, sets standards for intake, assessment, case management,
service planning, and the purchase of services.) During FFY 94, the Department
of Developmental Services issued its request for proposals for this evaluation
of the California CSLA Program. If service planning were to be person-centered,
as newly required under S.B. 1383, one might wonder, for example, why the
Department wanted to know to what extent "services and supports are
designed to fit individual needs and desires, rather than the reverse."
The answer is two-fold. First, legislative initiatives do not immediately
change everyone's behavior. It takes time to disseminate information, to
try new ways, and to incorporate new values within the work of agencies
and individuals. Second, supported living, with its inherent flexibility
and individualization, might teach us some things about ways of serving
people better and in line with the new values expressed in the S.B. 1383
amendments to the Lanterman Act.
The purpose of the evaluation was to provide information about CSLA of value
to the Department and to others. Supported living is here to stay, even
though CSLA has come and gone. Other funds are (and will be) used for such
purposes. Policies and practices can be improved. Toward that end, the Department
asked us to study the effects of various factors (e.g., individual differences;
family involvement; organizational policies and practices; costs) on service
delivery and use of CSLA. Specific areas of inquiry and questions are presented
The Basic Questions.
We were asked by the Department to consider the following questions in completing
What difference does CSLA make?
- for persons receiving services?
- for families?
- for agencies providing services?
- for regional centers?
- What are the public costs of providing CSLA services, and how do they
compare with likely alternatives?
- What accounts for variation in CSLA-related costs (and service use per
person)? geography? nature of the person's disability? service need? other
- How do costs change over time? What accounts for variations in costs
- How do the policies, procedures and practices of the players (DDS, regional
center, CSLA agency, individual) influence:
- (a) consumer outcomes;
- (b) family outcomes;
- (c) organizational outcomes;
- (d) service use; and
- (e) costs?
- How do other factors, such as length of participation in CSLA service
delivery, consumer developmental characteristics, and service needs influence
outcomes, service use, and costs?
Other questions that the evaluation sought to answer, include:
How do California's CSLA costs compare with those in other States,
and what accounts for differences?
What's the impact of CSLA on regional center budgets, and on use of related
services (e.g., ILS, licensed residential)?
How do practices in California stack up with those specified in the CSLA
What's happening with CSLA in other states? in supported living more generally?
That is, what trends and new developments?
Regarding Organizational Outcomes, we were asked to look at:
Are services and supports designed to fit individual needs and
desires, rather than the reverse?
Is there appropriate use of generic services?
Is there appropriate fading of paid services?
Are intake and evaluation processes non-biased?
Are there fewer disruptions in service delivery?
Are there adequate safeguards for ensuring freedom from exploitation, abuse,
neglect, and harm?
The framework for this evaluation rests on the assumption that: (1) information
about costs and demographics could be secured from existing data sets within
the Department of Developmental Services, regional centers and CSLA agencies;
(2) people closest to the action (e.g., individuals, families, service providers)
would be our primary source of information about outcomes; and, (3) we would
inquire as to how policies, practices and stakeholders affect each other
and services provided.
Early in the process of designing evaluation protocols, two matters were
clarified. First, the evaluation was to be largely formative rather than
summative in nature, pointing to ways of improving services and personal
lives by increasing living arrangement options. Second, we would provide
anonymity to individuals interviewed and to agencies in order to enhance
cooperation and candor.
Some of the Department's evaluation questions imply a conceptual framework
(or theory) about individual and organizational behavior. One part of our
task, for example, was "[To evaluate] . . . the relationships among
consumer outcomes, family outcomes, organizational outcomes, service utilization,
and cost, including identifying the factors which mediate these relationships."
We approached this task by assuming that, through the course of time, one
thing can influence another, and that the temporal sequence of "actions
and reactions" can be important in interpreting the record. We look
at the basic question of interrelationships at various places throughout
the report, but especially in Chapter 8, entitled System Effects.
While you will find a more detailed description of the methods we used to
answer the evaluation questions in Appendix A, we went about our work in
the following manner:
1. Convened representative community advisory groups to get
ideas (e.g., other questions; issues), and to critique preliminary plans.
2. Convened a Design Team of experts from California and around the country
for the same purpose.
3. Designed Survey Instruments and a plan for gathering information, storing
it, and analyzing it.
4. Project team members completed the field work. That field work, most
of which was carried out between February and September 1994, included:
- Interviewing 151 of the 283 individuals who were participating in
the CSLA pilot at the time and who consented to talk to us.
- Collecting 278 Support Services Checklists completed and returned
to us by CSLA agencies.
- Sending out 71 mail questionnaires to family members (or close friends)
- Interviewing CSLA liaisons (and selected service coordinators) in
the 7 regional centers chosen to participate in the programs.
- Interviewing program directors and selected support staff in all but
two existing CSLA agencies.
- Interviewing most of the 7 regional center directors, and all of the
6 area board executive directors to get the 'big picture.'
- Interviewing about 20 Community Monitoring Team coordinators and volunteers,
and collecting 85 questionnaires regarding the people for whom they perform
the friend/monitoring function.
5. DDS, CSLA agencies and regional centers assisted in compiling
service lists, and other data, including cost information.
6. A follow-up, phone survey of four-fifths of the CSLA agencies on selected
topics (e.g., costs, transition to non-CSLA funded supported living) was
completed in July 1995.
7. We completed a cost survey of two comparable states in the CSLA pilot.
8. Routine and topical reports were submitted as requested.
9. A quarterly newsletter, Imagine That! (see Appendix C), was developed
as a way to get information back to the field, and to maintain effective
working relationships with those kind enough to assist with the evaluation.
10. The final report was written.
11. Two end-of-project presentations on our findings were made in October,
1995, at annual conferences held in Northern and Southern California.
Who did CSLA Serve?
On June 30, 1992, approximately a dozen adults were being served with CSLA
funds. That fall, the number accelerated. By the time the evaluation began
(August 1993), there were approximately 250 individuals on lists of CSLA
service recipients. Where they lived is reflected by dots on the map of
California, which can be found on the cover page. By October 1994, the number
had risen to nearly 300, the approximate peak of participation. With movement
in (and out of) CSLA-funded services, and subsequent decisions at two regional
centers to use other services (or funds), the number continued to change
(typically in a downward direction) from that point in time to the end of
In terms of diagnostic indicators, in comparison with all individuals using
regional center services and known to the Department of Developmental Services
(DDS), CSLA service users were much more likely to have no mental retardation
(or to be mildly retarded) and to be non-ambulatory (often associated with
cerebral palsy). In terms of developmental level (DEV%), as reported on
the Client Developmental Evaluation Report (CDER), the average score was
76% for CSLA participants. Individual scores ranged from a low of 4% to
a high of 99%. (Developmental level is a measure derived from 23 CDER items
related to what the person can or cannot do. Raw scores range from 23 to
98. Expressed as a percentage, each person's score= Raw score minus 23/75)
X 100.) These averages varied little across regional centers, with the exception
of one, which had an average score well below those of the other six centers.
It's of note that the center was also one of two that used a lottery system
to select applicants for CSLA.
Our Support Services Checklist tends to confirm that one regional center
served a disproportionately large number of individuals with high support
needs. Two other regional centers also reported high levels of support.
Both serve major urban areas, where service expectations and costs may be
relatively high. Across the fifteen items that comprise the Checklist, relatively
high levels of support were said to be needed in the areas of money, health,
cooking, and getting around the community. At the other end of the spectrum,
getting around the house, eating, communicating, and daily routines typically
required less support.
We inquired about valued outcomes through interviews with 131 CSLA service
recipients. Twenty others were interviewed prior to moving to where they
wanted to live and those interviews dealt only with plans and the like.
Here are the highlights:
Choice. - Freedom and independence dominated responses
to questions about what people liked best about their living arrangements.
Approximately nine out of ten said they chose where to live and, if living
with someone, their housemate(s) and how to spend their money. Not infrequently,
some help was acknowledged. The percentage [of the 61% employed] who say
they chose their jobs was somewhat less (73%). Fewer than half said they
had a choice of two or more CSLA agencies. Agencies seemed to be making
a conscientious attempt to honor choice in who helps, doing this more successfully
with roommates, attendants and companions than in who fulfills the Community
Support Facilitator (CSF) role. CSFs typically spend a few hours a week
coordinating the work of others.
Health and Security. - Ninety-five percent of the people we interviewed
said that they felt healthy most of the time. One in six, however, expressed
a need for help with their health that they were not getting. Typically,
such health problems (e.g., gastric intestinal difficulties) were chronic.
No one said they needed a health service they could not get. Nearly nine
in ten said they had a doctor. Most people felt safe in their homes or apartments;
somewhat fewer felt safe in their neighborhoods. Their expressed concerns
were typical of most folks living in low- to middle-income neighborhoods
and apartments: street crime, lighting, and lack of police presence. Reasons
for liking one's neighborhood typically focused on good neighbors; pleasant/quiet
atmosphere; proximity to stores and services; and being close to friends.
As to whether anything is scary about the living arrangement, thirty mentioned
one or more perils. Typical ones included poor judgment (e.g., bringing
the wrong person home); environmental hazards (e.g., getting burned on the
stove); and being alone.
Satisfaction. - All but 5% of respondents said they "liked the
way they were living now;" and four-fifths were definite. More than
two-fifths of those we interviewed, however, said there were things they
would like changed. Most frequently mentioned were (1) a change in who one
lives with (e.g., alone; different roommate; intimate friend); (2) more
or better support; (3) living somewhere else; and (4) changes in the physical
environment (e.g., phones, TV sets, environmental controls, etc.). Other,
miscellaneous desired changes dealt with attitude/communication issues with
staff; having more money; jobs; schedules; friends; and getting out more.
Asked "Are you happy with your life right now?," 69% expressed
a definite "yes;" another 25% were less positive ("sort of");
only 6% said "No." The factors to which respondents attributed
happiness (or unhappiness) typically related to freedom or independence,
and relationships. Asked what would make life better, relationships were
most frequently mentioned. Examples include: being closer to family and
friends, living with an intimate friend, or a better roommate relationship.
Asked " . . . [are you] better off now than you were a year ago, about
the same, or not as well off?," 82% said better off; only 6% said not
as well off. By and large, individuals expressed considerable satisfaction
with services provided by their CSLA agency. Rated the highest were people
and the help they provided. Slightly lower levels of satisfaction were expressed
in regard to whether the agency is on my side; agency people being here
when I need them; and being asked (and supported) in my goals or plans.
Asked what they liked best about the agency, responsive assistance and nice,
helpful people were most frequently mentioned. One in ten mentioned getting
away from where they lived before. Asked "What could be better?,"
one in three said "nothing could be better." More or better help
dominated the responses (40%), followed by less staff or improved staff
attitudes (e.g., less control; less criticism) (11%), and an array of other
Other Valued Outcomes. - Nine out of ten individuals said they had
one or more personal goals, which tended to focus on work, relationships,
and living elsewhere. Of those employed, 13% told us the job was at a workshop
or activity center, and this may understate use of segregated work settings.
While generally satisfied with use of free time, given the opportunity (and
support) more people would go places (e.g., out to dinner; see friends,
etc.) than, as at present. The dominant leisure activity at present is something
at home (e.g., watch TV; use my computer). Sports/physical activities; having
jobs (or doing volunteer work); seeing family and friends more; and learning/going
to school were things people wanted to do more of. Transportation, distance,
and schedules were said to sometimes stand in the way. Nearly half said
they belonged to clubs, groups, or organizations, and this probably understates
things, because several volunteered information about church activities
elsewhere in the conversations. In the course of our fieldwork, we saw no
abuse or neglect. We did see a handful of instances, involving intrusiveness,
where interactions could have been better. The vast majority of respondents
said they had enough money for the basics (food, clothing, shelter, medicine).
Nearly half said that, at some time, they had run out of money. All said
they made do by borrowing from family or friends, eating leftovers, taking
advantage of free meals, or going without. Asked what they would do differently
if they had more money, travel/vacations was most frequently mentioned,
followed by purchases (e.g., van, hot tub, wheelchair), increase in savings,
and live elsewhere. Two individuals said they would drop their CSLA agency.
Support Needs. - By and large, individuals were pleased with their
services and supports. Especially appreciated were personal qualities (listening;
helpfulness; kindness). Least highly rated was whether staff asked about
goals and plans and were supportive in attaining them. In many areas of
life (e.g., doing more things; getting to know more people; getting a job;
changing living arrangement; etc.), individuals said they needed support,
typically from the CSLA agency. Over three out of four people who wanted
changes said they had talked to someone from their CSLA agency, but over
half of this number felt that staff were not helping with the change or
where not doing enough, quickly enough.
Although we heard from a small group of individuals (in terms of reporting
on statistical relationships), we learned the following from our family
and friend survey respondents:
They typically reported that their relatives or friends receiving
services were happy, safe in their homes and neighborhoods, healthy and
that they were happy with the people who work with them.
More than half reported that their friends or relatives in CSLA had enough
to do. Those who indicated that they did not, pointed to the need for more
support or training, an unsafe neighborhood, isolation, or lack of money
and/or transportation as barriers.
Individuals who responded are typically in contact with service-recipient
family members or friends through talking, visiting or having fun together.
Family members and friends were most often involved with planning for or
developing services and supports.
On average, they spent about six hours per week in some way with friends
and relatives who receive services.
Most respondents felt that they were spending the right amount of time.
Some would have liked to spend more time talking, visiting, having fun together
or making sure that support services were provided.
Most respondents stated that their friends and relatives in CSLA were better
off, or as well off as they were one year ago.
·The concerns expressed by relatives or friends typically had to do
with unmet service needs or support staff.
When comparing responses from friends and relatives, individuals with developmental
disabilities, and community monitoring team members, we found that:
CSLA participants, relatives, friends, and community monitoring
team members typically perceive key lifestyle questions (e.g., happiness,
health, safety) in the same way.
CSLA participants, relatives, friends, and community monitoring team members
typically agreed that individuals were happy, healthy and safe.
Area Boards reported that the most effective activities in facilitating
an understanding of CSLA funded supported living service for families were
(1) informal discussions during monitoring activities; (2) ongoing conversations
with families of current or potential service users; (3) participation of
family members in CMT activities; and (4) face-to-face meetings as a part
of a circle of support.
Services and Supports
What impact has CSLA had on agencies providing services? On selected aspects
of service and supports, our major findings are:
Across the seven participating regional centers, 27 agencies
(or branches of agencies in other regional center areas) took part. In October
1994, when about 300 people were being served, 12 agencies had 1-8 participants;
9 were serving 9-16; and 6 had 17 or more. Four agencies had been involved
in supported living pilot efforts prior to CSLA. Another 12 had experience
with independent or supported living services (ILS/SL) in other ways. Eleven
were new to these approaches.
Are services designed to fit the person, or is the person selected to fit
the service? In planning services, getting to know the person is crucial.
Spending time with the person, talking, listening, and observing is perhaps
the best way to do an assessment. In approaching individuals new to their
agencies, several used person-centered planning techniques, such as Personal
Futures Planning, PATH, MAPS, or Essential Lifestyle Planning. Only one
assessment tool, the CAP (Consumer Assessment Package) questionnaire, was
prescribed by the CSLA Manual. All used it. Some agencies, especially those
with an ILS background, used skill assessment tools, such as TRACS. Liberal
funding of assessment encouraged completeness. Sticking to basics and adherence
to a particular 'model' tended to constrain the breadth of assessment. Cost
containment meant restrictions on hours or duration of assessment activities.
Several factors appeared to influence whether (and how) agencies got to
know new people: (1) funding of (or lack of funding for) assessment; (2)
the tradition or expectation of an agency's services (e.g., skill acquisition;
sticking to basics); (3) costs and attitudes toward cost-containment and
economic efficiency; and, associated with this third point, (4) whether
the agency leaned toward a particular 'model' (e.g., paid roommate; supported
cluster of apartments; three-to-an-apartment; etc.).
Beyond assessment and service planning, are services responsive to the needs
and wishes of the individual? Agencies varied in the kinds of relationships
they promoted: for example, collaborative teamwork vs. professionally-driven
approaches; or friendship between worker and participant, or maintenance
of greater boundaries, with some professional distancing. These differences
are considered important in terms of service needs and commitments to standing
by people. "Models" along the lines noted above, also played a
role. Their use typically meant that responsiveness was constrained by the
particular approach used. Staffing arrangements tended to be more horizontal,
but some agencies maintained hierarchical traditions. Several agencies tried
hard to 'match' workers with participants, in terms of skills, attitudes,
demeanor, interests, etc. Evidence from Individual Interviews suggests that
smaller agencies were more likely than larger ones to offer participants
choice in who worked with them. We think this stems from larger agencies
having workers with seniority, and smaller programs growing quickly from
a very small base. Regional center policies and practices also played a
role. Some regional centers were more inclined to suggest agencies, than
encourage the person to explore options and choose. Regional centers varied
in whether liaisons knew most participants well, and in how often they sat
down with CSLA agency program managers to problem solve. Some regional centers
pursued fading of paid services more vigorously than others, or encouraged
'models' that were more costly (or less costly) than services might otherwise
In terms of generic services, by which we mean those not exclusively for
people with developmental disabilities, most agencies vigorously pursued
such services on behalf of those they served. Certainly this was true of
housing (e.g., Section 8 Rental Assistance). Most agencies, but not all,
worked hard to connect people to the IHSS program. Those that did not tended
to be leery of participants having $4.25 per hour workers, or were not as
sophisticated as others in blending IHSS and CSLA-funding. Transportation
continues to be a big problem in many areas of the State. When it comes
to adaptive equipment and assistive devices, the process is reportedly too
slow (getting Medi-Cal denials) and resources often inadequate within certain
geographic areas. Access to physicians, and especially dentists, continues
to be problematic for some. And, several informants said that mental health
services were inadequate.
Regarding natural supports, 85 percent of the individuals we interviewed
spent time with family and/or friends. Many CSLA recipients expressed interest
in more friendships, greater intimacy, and more things to do. Agencies typically
said that 'building natural supports' was among the hardest things to do.
If it occurred, it tended to do so naturally. Most agencies were struggling
with how to encourage natural supports. Based on interviews with service
providers and CSLA participants, we conclude that agencies can help by emphasizing
(1) that friendships can happen; (2) that both parties will benefit; (3)
that discretion helps in facilitating connections (when to introduce, when
not; coaching and encouraging; etc.); (4) that opportunities should be pursued;
and (5) that friendship formation and community-building is serious and
As to the fading of paid services, our initial field work revealed uncertainty
and some pessimism. "It's too early to tell" was not an uncommon
reaction. From a more recent (July/August 1995) telephone survey, we know
that fading does occur with some frequency. Reasons are typically greater
confidence on the part of the person to do things without assistance; greater
skill in some cases; establishment of routines, with associated fading of
more expensive services (CSF, for example) for less expensive services;
and natural supports (e.g., getting a job; or a boy friend taking the place
of paid staff at night). Fading is not as likely, we were told, when the
person has intense physical, medical, or behavioral needs. Indeed, in a
few instances paid service and support needs rose over time because of physical
or mental health issues. In one town, over a period of three-to-four years,
associated with a supported living pilot (pre-CSLA), costs - in comparison
with those at a large ICF - tended to be higher, but then came down well
below the ICF average.
Safety, Risk and Choice
The CSLA legislation emphasized safeguards (called Minimum Protections)
to minimize abuse, and broke new ground in the area of Quality Assurance
by calling for Community Monitoring Teams. Regarding Minimum Protections,
major steps were:
A requirement that CSLA agencies (1) check on the backgrounds
of employees and agency volunteers; and (2) avoid practices that could lead
to financial abuse (e.g., owner-lease-backs; being named beneficiaries in
life insurance policies; controlling a consumer's money).
Agencies were to: (1) provide employee training, covering specified topics;
(2) establish a grievance procedure; (3) provide consumers with information
and training on rights; and (4) carry liability and fidelity insurance.
In addition, agencies were to have policies, procedures, and practices to
include: (1) a 24-hour response system for each person, with training as
appropriate; (2) a system and methods to ensure consumers received adequate
health care; (3) a personal advocate when needed and desired; and (4) help
in making connections and developing a circle-of-support (if desired).
Regional center case managers and CSLA liaisons were to review services
periodically, and DDS would conduct a formal [certification] survey at least
DDS certification reviews, which covered many of these matters as well as
others, revealed substantial compliance with expectations. In initial reviews,
a few deficiencies were noted, mostly in the area of personnel (job descriptions;
employee screening; procedures to prevent exploitation). All were remedied
before certification was completed.
California used its Area Board system for Community Monitoring Teams. CMT
coordinators found recruitment and selection of team members one of their
most challenging tasks. One CMT had a volunteer for each person; at the
other extreme, one had a volunteer for every 12 participants. One CMT contracted
out the service. One regional center contracted for on-going monitoring
because the CMT had difficulty getting up and running. Of over 100 CMT members,
two-fifths were service providers; a quarter were parents or siblings; and
one-fifth were people with developmental disabilities. Attention was paid
to good matches. Many CMT members initially used the 112-item Quality of
Life Survey provided in the CSLA Manual, but subsequently went to a shorter
set of questions with a more conversational style. A partial review of completed
surveys revealed concern with (1) acquisition (and maintenance) of adaptive
equipment and assistive devices; (2) choice (e.g., housemates; places to
live; agencies); (3) lack of opportunities (and support) in developing social
relationships; and (4) transportation. Problem resolution was initially
problematic in a few instances, but Regional Center personnel, CSLA agency
people, and Area Boards seem to have worked out effective ways of resolving
issues. CMT coordinators emphasized that individuals were typically delighted
with their supported living arrangements.
The most frequently mentioned best things about supported living services,
according to CMT members, were: (1) empowerment, choice, and control; (2)
better and more integrated living arrangements; and (3) individualized,
quality services. As to what's the best thing about being a CMT member,
being a friend, playing a helpful role, or just being involved in an effort
to make a positive difference in someone's life were mentioned most frequently.
Compared with more traditional independent living services, CSLA heightened
concern for the occasional conflicts between choice and risks to health
and safety. Reasons included: (1) the emphasis on self-determination and
choice within CSLA; (2) the very considerable interest in minimum protections
and safeguards for health and safety; (3) the more varied backgrounds, needs,
and desires of people, many of whom needed far more support than traditional
for individuals attracted to ILS services; (4) the expectation that services
and supports would respond to what a person needed or wanted, rather than
be restricted to an agreed-upon set of services embodied in a standard curriculum;
(5) the fact that several agencies were new to supported (or independent)
living services; and (6) the new value of standing by individuals, through
good times and bad, rather than terminating service relationships if people
were irresponsible or had a tendency to get into trouble. In general, agencies
(and regional centers) learned to balance choice with health and safety,
typically going beyond training and counseling, where necessary, and bringing
to bear ideas and influences from several angles. Risk assessment tended
to be more informed, and teamwork (or collaboration) often played an important
Service Use and Cost
In March 1995, the average cost of CSLA services (per person per month)
was $2,240. This does not include SSI or other sources of personal income
for basic needs such as food, clothes, and shelter. The average cost of
CSLA services varied by regional center. The highest was $3,040; the lowest,
$1,777. There is some evidence of "economies of scale" up to at
least 15 to 20 consumers per agency - that is, per person per month costs,
on average, were lower for programs of this size than for smaller ones,
especially for the very small agencies with five or fewer service recipients.
About half of all CSLA service recipients accessed In-Home Supportive Services
(IHSS). Thirteen percent were granted 280 or more hours per month. IHSS
hours were positively correlated with CSLA outlays, and the regression coefficient
for IHSS hours was statistically significant. We suspect that CSLA outlays
would have been even higher in the absence of IHSS. Over a third (36%) of
CSLA recipients lived with one or more other service recipients. About the
same percent lived in close proximity to other consumers. Living with another
consumer is associated with an average reduction in monthly CSLA outlays
of about $400; living with two consumers, about $800.
On balance, fading of paid support is confirmed by our cost data. Excluding
843 (Equipment), 845 (Overhead) and extraordinary 842 (24-Emergency) outlays,
remaining CSLA costs per person-month averaged $1,994 during the initial
full support month (actually 3-month average) for each person. By March
1995, this number had declined to $1,829, or by $166 per person. The average
length of this period was 15 months. Over the same average time span, CSLA
Agency (i.e., overhead) costs declined from 27% of the total, across agencies,
to 18 to 20%. This suggests a further decline of $180 per person-month.
If a reduction in the use of regional-center-funded day program services
were factored in, regional center outlays declined by another $35 per person
per month, across 300 CSLA participants. (The percentage using such day
program services declined from 33% to 27% by March 1995.) The extent of
decline in CSLA costs was greatest for (1) those who had received services
for the longest period of time; (2) those with developmental level (DEV%)
scores of 70 or above, who had no mobility limitations; and (3) among individuals
living with other consumers receiving services, perhaps because they shared
Only at one regional center (B) did average CSLA direct-service costs increase
over time. Regional Center G experienced the largest average reduction:
-$506 (or -25%), from initial full month of support to March 1995.
Of approximately 300 individuals receiving CSLA (or, in some instances,
ILS or other SL) services in March 1995, 40% had been receiving ILS services
just prior to CSLA. (A quarter of this number had been participating in
SL pilots.) Another 21% had lived with family or friends; 23% in community-care
facilities; and 16% in long-term health-care facilities. The monthly cost
of CSLA services in March 1995 was about $672,000 ($2,240 x 300 consumers).
Based on estimates (and reasonable assumptions) of the average public cost
of various alternatives, we estimate that, in the short-run, CSLA added
about 100% to what would have been spent had CSLA not existed (estimated
public outlays of $320,289 to $387,525).
"About 100%" may overstate the change to the extent that many
participants from parental homes would have gone into relatively expensive
residential arrangements. It should also be noted that 50% of the cost of
CSLA was new federal money. In the absence of CSLA, quite a number of participants
would have received services funded wholly with state dollars.
In terms of personal and regional center correlates of unit (per person
per month) costs, details have been relegated to Appendix D. In general,
as highlights, we can report that:
CSLA costs were higher for women than for men, perhaps due to
greater protectiveness and the greater frequency of having dependent children
in the household.
Developmental level (DEV%) was inversely related to unit cost. Having mobility
limitations or a Behavior Factor Score of 30 or higher (meaning a high level
of maladaptive behavior) was associated, with considerably higher cost,
on average. On the other hand, there is no statistical evidence that our
measures of medical needs or sensory impairments were correlated with cost
Regional centers varied somewhat in costs, as already indicated. There is
some statistical evidence that, controlling for service need, some regional
centers had higher (or lower) costs than others.
In terms of systemic matters, two organizational outcomes were of particular
interest: (1) whether intake and evaluation processes were non-biased; and
(2) whether there were fewer disruptions in service delivery. Regarding
the first, . . .
Regional centers used a variety of means in outreach efforts,
often in collaboration with area boards, including dissemination of brochures
and flyers; placing announcements and articles in newsletters; presentations
to consumer, agency, and parent groups; and public forums and fairs where
interested parties could meet and talk with service providers.
Regional center case managers played a key role. Just over half of the service
recipients we interviewed said they had first heard about CSLA from their
regional center Client Program Coordinators (CPCs). One in five learned
about CSLA from a provider agency; one in ten from a family member or friend.
The nature, location, and pre-existing service offerings of agencies also
played a role. Some agencies had been involved in supported living pilots
or were providing ILS or supported employment services, and in cooperation
with regional centers, encouraged CSLA services for some of those they were
At root, having access to information about supported living, and some source
of personal advocacy (e.g., a CPC, an existing service provider, a parent
or close friend), were important factors in who received CSLA services.
Compared with all clients of the Department of Developmental Services, those
who used CSLA services were more likely to be female (48 vs. 44%); to be
non-ambulatory (38 vs. 26%); and to be non-Hispanic whites (80 vs. 53%).
Only two of the seven regional centers adhered to the CSLA Manual in terms
of using intake and selection processes and panels of appropriate composition,
with prioritization as a means of selection.
As to disruptions in service delivery, we cannot say whether they were less
(or more) common. We had no comparison group. With unknowns associated with
any new service, one might anticipate more discontinuities. On the other
hand, agencies told us that they were standing by people rather than, in
effect, saying to consumer: "take what we have, if you want it, or
do something else." When a service termination was likely, agencies
said that they worked hard to connect people to other services responsive
to the individual's wants and needs. Early in the pilot, with time delays
associated with start-up, quite a large number of applicants found other
services while waiting. Once served, some returned to family homes (or licensed
places) where they had lived before. A few people (e.g., parents; those
used to a single ILS counselor) found the service too intrusive, or didn't
want so many people in their lives. Some changed CSLA agencies for one reason
or another - typically over problems with the service or the way in which
an agency did business.
The CSLA pilot came at a time when supported living was in the air for a
variety of reasons, and people were eager to expand living arrangement options.
In terms of major events (e.g., S.B. 1383; the Coffelt Settlement Agreement;
expansion of California's Home and Community-Based Services, Medicaid Waiver),
the effects continue to work themselves out, with the Coffelt Agreement
providing impetus for more Adult Family Homes (AFHs) and CSLA jump starting
supported living arrangements. AFHs are like foster care homes for children.
Adult Family Home agencies recruit and support homes, certified by the Department
of Developmental Services, that serve no more than two adults.
When things are going right, the various players in the supported living
drama are expressing themselves, making responsible decisions, being smart
about the delivery of services (e.g., responsive; cost-effective), evaluating
services as well as individual well-being, advocating for improvements,
working diligently and effectively together, taking advantage of generic
services and natural supports, pushing for 'regular lives,' in integrated,
safe neighborhoods that make sense for each person, and working to fix some
systemic problems, involving such matters as affordable housing, transportation,
and adaptive equipment and assistive devices.
As a counterpoint, we highlight one situation where several positive influences
were missing, and the cumulative effect would disturb nearly every outside
observer. Despite general unhappiness about their situation and services,
however, eight out of the nine service recipients in this one case said
they felt "better off" compared with a year earlier. All had transitioned
from an institutional setting.
In terms of basic influences on outcomes of interest, DDS, regional centers,
CSLA agencies, individuals and families played important roles. All can
take credit for the significantly improved lives of nearly all who were
served. The Department's influence was rather global: (1) increased interest
in alternative living arrangements; (2) greater use of person-centered planning
techniques; (3) clarification of important issues, such as balancing risk
and choice; (4) capacity-building in general; and (5) expansion of California's
HCB Medicaid Waiver, with attention to supported living. Regional center
effects were felt largely through (1) recruitment of CSLA agencies; (2)
choice of agency; (3) the critically important role of case managers; and
(4) how CSLA liaisons did their work.
Influenced by DDS, regional centers, and others, (1) many CSLA agencies
adopted (or refined) practices in keeping with supported living values and
principles; (2) some learned more about person-centered planning and personalized
services; (3) many organized their work differently (e.g., more teamwork;
more part-time helpers; etc.); and (4) some deliberately stayed small, while
others grew quite rapidly. The influence of service recipients was felt
in many areas. Two are especially noteworthy. First, some agencies chose
not to provide incidental transportation. Independence, cost and other factors
doubtless played a role, but liability concerns were also expressed. Second,
some agencies sought to become providers of IHSS services, which can lessen
choice. While appropriately meshing IHSS with regional center funded services
can be complex, poor choices by service recipients were among the factors
given by agency representatives in arguing for their greater control over
As to influences on service use and costs, many factors can be mentioned.
Targeting people with significant mobility needs, parents, and others resulted
in a wide array of service needs. Offering choice of agency within a huge
state in both geography and population, along with higher-than-expected
average costs, had an effect. The absence of certain approaches made a difference:
(1) no caps on service use; (2) no RFP process to test interest and commitment;
(3) no vouchers; and (4) no requirement as to the minimum number of people
to be served with a given dollar outlay. Traditions in California (e.g.,
basic entitlement to services; complexity of the service system), along
with the way CSLA was implemented in California, tended to inhibit much
use of "independent service brokering." CSFs were brokers, but
operated exclusively from within agencies providing other services.
Regional centers influenced service use and costs in several ways, including
but not limited to: (1) which vendors were recruited and how they did their
work; (2) targeting (or the lack thereof) of who would be served; (3) contractual
arrangements, with one center using a capitated monthly rate system; and
(4) policies and practices regarding adaptive equipment and home modifications.
The influence of CSLA agencies on service use and costs was expressed through
(1) the adherence of some to particular 'models' (e.g., paid roommate; 3-to-an-apartment;
on-site support to people living in close proximity); (2) what type of service
the agency had been providing earlier; and (3) the aspirations of various
agencies (e.g., to stay small and excellent; to be large and cost-effective;
etc.). The influence of individuals and families on service use and costs
was felt largely through (1) any stimulus toward overprotectiveness; and,
(2) high aspirations for a particular lifestyle.
Finally, with the end of the CSLA pilot, and the transition to other funding
sources (most notably, the HCB Medicaid Waiver for those eligible), one
can see the pervasive influence of resource limitations. Several regional
centers and agencies have been considering managed care approaches. Agencies
and centers are paying more attention to the prioritization of needs and
wants. Centers are being more careful in authorizing extra funds for back-up
and crises, leading one agency to require that new service recipients have
a day program. More than one agency has moved to a paid roommate to cover
night-time hours, reducing reliance on hourly staff for this purpose. Agencies
varied in their outlook on who will be able to access supported living in
the future. Some felt that people with intense needs will be increasingly
ruled out. Others felt that this is unlikely, in part because comparative
costs may suggest supported living as an economically viable option for
many. Less attractive rates may reduce interest of new service providers,
but an expected reduction in paperwork and related restrictions may result
in more providers, including independent assessors and independent service
brokers, unaffiliated with agencies providing other services.
Trends and Comparisons Across States
Looking at both the HCB Medicaid Waiver and CSLA programs, both of which
have been vehicles for advancing supported living as an alternative to facility-based
residential services, one sees several trends:
a broadening menu of services, to include several which undergird
supported living, including personal care, personal assistance/attendants,
supported living (by its own name), homemaker/chore services, respite, adaptive
technology/assistive devices, and home modifications;
support coordination (personal agent, or broker model), typically as a service
to assist the individual in accessing a broader, more flexible, tailored
set of services and supports, and to supplement the more traditional gatekeeper/service
director role of case management within the MR/DD service system;
increased use of person-centered approaches to planning;
giving the individual more choice and control as to which agencies, and
which people, will provide needed services (e.g., being able to "fire"
the support services agency, without losing supported living services);
establishment of policies to guide payment of family members for personal
assistance and other services (although this option is not heavily used);
a movement toward judging quality based largely on valued outcomes as viewed
by the service recipient and involved family.
States would like to see further changes in the HCB waiver program, so that
they can make better use of it. Among the major suggestions:
making eligibility for HCB not dependent on eligibility for
institutional services (and, in the case of supported employment, past institutional
care as well);
permitting the 'bundling of services,' and using a managed care approach;
use of cash subsidies or vouchers; and,
aligning the HCB program with certain tenets of CSLA.
The eight states chosen to participate in the CSLA pilot approached service
delivery in similar, yet diverse, ways. Florida decided to use CSLA funds
exclusively for Supported Independent Living Coaches, who (on paper, anyway)
were expected to perform a series of tasks not unlike many counselors in
personalized ILS programs in California. Colorado's flexible approach emphasized
the role of a Supported Living Consultant, who can work for an agency, be
a family member, or work out of their homes, to broker and help access services.
Michigan placed great emphasis on the role of the Individual Support Planning
Committee, with the person receiving services being the employer (with assistance,
as needed). Other states have used CSLA to advance certain reforms (e.g.,
independent case management; developing a unified system; etc.).
Sparked by CSLA, Rhode Island has proposed to the federal Health Care Financing
Administration (HCFA) a research and demonstration project, called CHOICES,
that would represent the first major restructuring of long-term care. All
federal Medicaid funds, along with state dollars, would be put into a single
resource pool. Individuals would exercise control over their share of resources.
Support brokering would substitute for traditional case management. A unitary,
cross cutting set of standards would replace program-by-program standards.
And, a managed care health plan would be installed to ensure access to a
reliable system of medical services.
Service costs in California, which were originally projected to be quite
low, have been toward the high end of per capita costs across the eight
states. Several factors may account for this: (1) the scope of services
offered by each state CSLA program; (2) the absence of much experience in
California with supported living for individuals with significant needs,
and associated high start-up costs; (3) relatively high wage rates and housing
costs; (4) the significant service needs of many California CSLA participants
(e.g., nearly 40% non-ambulatory); (5) the difficulty (and expense) of assuring
choice in a very large State, in terms of both population and geography;
(6) the configuration of living arrangements (e.g., percent supported in
family homes; living alone; living with one or two other service recipients);
(7) the relatively low average annual cost of services in California under
the rapidly expanding HCB waiver program; (8) the limited options in California
between supported living, as an ideal, and conventional group homes (licensed;
typically serving six people each); and (9) some aspects of the way in which
CSLA programs were implemented. In this regard, in California, we suspect
that the following influences were felt: a well-established tradition of
regulatory control permeating the service system; limiting the Community
Support Facilitator role to agency employees; fear of liability; and rigid
practices around vendorization and the use of contractors.
We were able to compare billing rates per hour of service in California
with those in Michigan. The average (or median) rates for personal assistance,
training and habilitation, and support for community participation are much
the same. The spread (or dispersion) in rates is much greater in Michigan
than in California. Hourly rates near the lower levels of distributions
tended to be higher in California than in Michigan, with just the reverse
true toward the high ends of the distributions. The influence of two factors
are difficult to weigh. On the one hand, the California hourly rates are
doubtless lower than they would be in the absence of separate funding of
the indirect service category called CSLA agency. This may be offset by
lower average wages and other prices in Michigan compared with California.
Where Do We Go
Now, it's time to reflect on the findings in this report, and to offer recommendations
for service users, providers and policy makers.
For supported living not to be restricted to the "lucky few,"
we will have to get smarter (and better) in the use of generic services,
natural supports, and working together within an atmosphere of principled,
consensus decision-making, trust, and hard work. The result, we feel, will
be better lives and better use of available public resources. The struggle
to balance such resources with wants and needs, in the near-term future,
will not be easy - in part, because of the State's fiscal woes and the fact
that most everyone is learning new ways of thinking and doing. While seeking
additional resources, it makes sense for everyone to work for increased
efficiency and more affordable services.
Here's an overview of the 48 recommendations spelled out in Chapter 10:
Adults with developmental disabilities and their allies need
to work with others (elderly; people with other disabilities) at all levels
to get the resources (and respect) needed to support a wider array of living
To the service provider and quality assurance community (supported living
agencies; regional centers, DDS, and Area Boards), we recommend the following:
Interested individuals (and family members) should work with regional centers
and others to put to good use the option of Parent-, Family-, Consumer-Coordinated
An array of cost-effective approaches. - Development of a wider array
of approaches to supported living, including service brokering, placing
greater authority for resource allocation decisions in the hands of consumers
(with the help, if needed and desired, of a Circle-of-Friends), and avoiding
over-reliance on a particular model (e.g., paid roommate; on-site apartment
support; 3-to-a-dwelling; etc.). Greater cost-effectiveness should flow
from these and other initiatives; changes in vendorization practices; and
managed-care-type contracts. We need to assess (and reassess) when Independent
Living Services (ILS) or Supported Living (SL) makes sense. We must speed
access to adaptive equipment and assistive devices (and repairs), without
loss of federal matching funds.
Devising patterns of support. - Flexibility in assessment, with use
of person-centered techniques and attention to technology, adaptive equipment,
and home modifications, allowing sufficient time (with resources) to get-acquainted
and to figure out supports and services that make sense. Prioritizing needs
and wants, and being responsive (directly and indirectly) to areas of unmet
need: e.g., getting out and about; friendships; roommates; moving; getting
a job; etc. Taking time to talk about hopes, dreams, and plans for the future,
and finding ways to assist, directly or indirectly.
Community membership and quality relationships. - Being clear on
desired relationships between helpers and service recipients. Welcoming
and working with families and close friends, if this is what the service
recipient wants. Collaboration and teamwork, from the start, will encourage
the involvement of family and friends, if this is what is desired (and possible).
Honoring preferences regarding informal support networks. Supporting efforts
to facilitate the development of natural supports and community membership.
Helping people form and maintain quality relationships with family, friends,
and others, including people with disabilities. Considering additional ways
to do this (e.g., friendship matching).
Paid helpers. - Devising ways to work with people, so that they have
as much choice as possible regarding who provides services and supports.
Improving recruitment, selection, training, and supervision of support personnel,
with emphasis on teamwork at the level closest to the service recipient.
Finding ways to substitute lower-paid for higher-paid workers without adversely
affecting Quality of Life and services.
Life quality and service satisfaction. - Using individual interviews
to learn about service needs and service satisfaction. Supporting continued
involvement of family and friends in service evaluation, and in the service
planning process (e.g., How would you like to be involved?). Defining quality
in terms of valued outcomes as viewed by service recipients and (where appropriate)
family and friends. Including health and safety if overlooked by others.
Clarification of responsibilities for various outcomes.
Balancing risk and choice. - Continuation of technical assistance
and information dissemination regarding risk assessment and ways to balance
choice and risk. Developing clear guidelines and exemplars regarding liability
of service providers.
Teaching, learning, and technical assistance. - Teaching/learning,
with an emphasis on (1) various approaches to person-centered planning;
(2) building community connections; (3) team-building; (4) conflict resolution;
and (5) how to use In-Home Supportive Services (IHSS) wisely. Developing
and making available information on adaptive equipment and assistive devices.
Creating ways (e.g., job outposting) for regional center staff to do direct
service, and for agency people to learn more about regional centers.
Dealing with some broad, systemic matters. - Considering ways to
merge DDS and DR funds, so that a service provider can respond to integrated
employment opportunities. Considering further amendments to California's
HCB Medicaid Waiver - if such continues - for supported employment. Working
with others (1) to extend and improve IHSS and its effective use; (2) to
develop decent, well-managed, integrated, accessible, low-cost housing;
(3) to expand and improve use of the Section 8 Rental Assistance Program,
with emphasis on shared housing and full portability; and (4) to extend
and improve use of generic transportation.
Best practices, and continuous quality improvement. - Learning from
one another, and from "best practices" everywhere they can be
found, by looking at the experience of providers, intermediate units, and
State MR/DD agencies throughout the country.
In Closing, . . .
A great deal has been accomplished through the CSLA pilot. Most noteworthy,
in our minds, are the following:
1. The lives of 300 or so Californians have been significantly
improved! There have been major spin-off effects (e.g., HCB Medicaid Waiver)
2. Choice and regular lives, with accommodations and support, have have
been given greater emphasis.
3. Service providers have learned a lot about supporting people who, in
an earlier era, had no opportunity to live in their own homes.
4. We need to figure out, and put into place, a wider array of cost-effective
living arrangement possibilities attractive to adults with developmental
disabilities, and responsive to how they see their lives unfolding.
5. The preconditions for supporting more people in their own homes have
been established (knowledge, experience, will) - thanks, in large measure,