In order to
embark on a project of such fundamental significance, UCPA had to proceed from a
set of assumptions that would direct the course of an uncharted journey -- how
to offer increased choice and financial control to assist persons with
significant disabilities to become “customers” or purchasers of employment
services, as opposed to “consumers” or recipients of services. Some of these assumptions were outlined in component form in
the Request for Proposal (RFP) from the Department of Education and others were
developed as a part of our unique response to the RFP regarding project design.
The RFP directed each submitting party to include a project design that
addressed the following components:
A.
Consumer direction This
component of the RFP required that persons with disabilities should direct their
information gathering process, employment planning, selection of targeted
outcomes and the selection of providers.
We
built participant direction and control into the design of the project by having
consumers direct their employment plans, choose advisors and providers, approve
payment for services, acknowledge satisfaction of every service rendered,
negotiate rates and withdraw from contracts in cases of non-performance.
B.
Informed choice The informed choice component of the federal
requirements addressed the concern that participant “choice” not simply be a
matter of individual preference but that information on consequences, costs and
options be made available to participants before choices were made.
The
UCPA project suggested that participants use funds from their budgets to retain
the services of an employment advisor to assist with selection of providers,
negotiation of rates and services, provision of information, options and
opinions related to employment decisions and assistance and support throughout
the employment process. Participants
could also recruit volunteer advisors, if available, in order to save resources
in their budgets.
C.
Qualified providers In keeping with the regulations of the
Rehabilitation Act, each grantee had to assure that the providers selected by
participants for employment services were in some manner “qualified” to
provide those services.
The
Choice Access approach was unique in that we utilized a “building code”
approach to qualifying providers in addition to providing service providers with
free training and technical assistance. The
building code concept was based on a Self-Directed Staff Training Curriculum on
Supported Employment developed by UCPA in the early ‘90's for a NIDRR funded
innovative research project. Providers
were required to attend free trainings offered by technical assistance personnel
assigned to each site and they were required to follow the processes outlined in
the curriculum. In this way,
participants could select anyone other than persons with whom they shared a
residence to provide services, as long as those persons or agencies agreed to
attend free training and follow the strategies described.
D.
Consumer satisfaction Each
project had to show how the satisfaction of participants drove the major
outcomes of employment -- planning and goal setting, payments to providers, the
relevance of outcomes obtained, treatment received during services and the
process as a whole.
UCPA
developed a satisfaction component that was part of every payment approval
submitted by the participant. The
concept is similar to the customer response form that are common today after one
purchases a new vehicle from a car dealer.
Additionally, the profile planning meeting addressed the ideal
characteristics of employment for each participant and those characteristics
became a blueprint for the job developer to use for customer satisfaction
purposes after a job was developed.
E.
Complete separation from vocational rehabilitation services -- no current
IWRP
A final component required that the funds from the choice demonstration
not be mixed with other funds associated with VR services.
This separation was necessary to allow a comparison with traditional VR
services.
This
requirement was easily met since UCPA is a non-profit service agency, not
connected to any government entity. Our
site coordinators assured that each applicant either had a closed status with
VR, or if active, assisted applicants to resign their active status with VR
before project services were initiated.
F.
80% of all funds had to be in control of participants This
requirement responded to criticism from advocates that too much of the taxpayer
dollar was siphoned off for administrative costs before the participant received
access to funds. This percentage
was an absolute target for each project.
We
found that, while we were successful in conforming to this absolute requirement,
that the 80% target for funds to be controlled by the participants was onerous
and limiting. UCPA took a 5.5%
indirect rate for this project, which was far below our federal negotiated
indirect rate. The indirect rate
was considered a part of the 20% administrative allowance for these projects.
Additionally, we re-invested all of the indirect back into project
services, especially in the area of training and technical assistance and staff
raises. A much more reasonable rate
for administering a personal budget/choice effort, excluding a reasonable
indirect rate, would be 25% of the total funds.
These
required components were each based on a set of assumptions that drove the
implementation of the overall choice demonstration initiative.
In response to the required components, UCPA developed a design that was
based on assumptions in keeping with what we perceived to be the best practice
values and strategies available at the time.
As the implementation of the project proceeded, some of the assumptions
were sustained and others had to be adjusted as we learned from our experiences.
The following section presents those critical assumptions and whether
they were sustained or had to be revised based on our experiences.
It is our
feeling that this information represents the real “data” of the project.
While the information presented in the DATA section, below, is factual
and even interesting, our experiences and the resulting reflections comprise the
true meaning of the choice experience. These
assumptions are far more generalizable to other situations, systems and groups
of people.
1.
We thought the only way to fairly provide a “voucher” was to use a
set standard rate for all participants.
For the UCPA
project the rate that emerged from our proposed calculations was $9,466 per
participant. This rate was based on
an historical average of costs from 1987 - 1992 in employment projects managed
by UCPA. We had found that the
average cost of employment services from intake to the point of initial
stability on the job was approximately $7,500.
We had also traced the average costs of worksite accommodations for
persons with significant physical disabilities and had found an average of
$2,500. When we finalized our
proposal, considering the money available and the projected number of persons to
be served, the compromise figure of $9,466 emerged.
We anticipated that some persons might need more funds and they could
apply for a budget increase and we figured that some might need less or might
drop out before expending their total budget and, hence, would spend less.
The actual amount expended by project participants for regular employment
was $8,360, with a range from $1,750 to $15,821.
For self-employment the average was slightly higher, $8,660, with a range
of $2,525 to $21, 227.
While the
establishment of a set budget rate for each participant seems equitable and
certainly assists in planning, it is not individualized, as required by the
Rehab Act and it results in standardization of costs. During the course of the project we found that once we
established a set budget amount, we lost the statistical effect associated with
“average”. The widely varying
costs that made up the average rate must then be contained within a capitated
amount once a budget rate is set. Additionally,
participants tended to spend up to the amount of money available, if the rate
was known in advance.
We now feel
that a better approach is to individualize the budget process by having the
employment plan drive the development of a personalized budget for each
applicant. Of course, its possible
to have guidelines that set reasonable parameters for proposed budgets to fall
within, but each budget can reflect the unique needs of each participant.
In the final year of the project, UCPA was given permission to expand its
project services to include approximately 30 individuals who lived remote from
the three project sites. We
implemented an individually determined budget process for these remote
participants and their average budget was $4,335 with a range from $3,365 to
$6,200. In order to implement this
type of budget process it is necessary to have costs associated with discovery
and planning available to participants before budgets are developed and a
committee (or designated individual) must
be impaneled to approve proposed budgets. In
a new grant effort, subsequent to the Choice Access Project, UCPA has
implemented an individualized budget process for persons with significant
physical disabilities using DOL One-Stop Career Centers for employment services.
2.
We projected that it was useful, perhaps even necessary, to provide
participants with an idea of reasonable costs associated with services.
We provided
a list of costs that were developed in consultation with local providers, VR
counselors and state DD personnel in each of our three project areas.
A suggested reasonable price list was included in all standard contracts
for each service outcome purchased by participants.
Providers had access to these costs though the participant manuals that
were provided to each person in the project.
The structure relating to these suggested rates allowed participants to
either negotiate for the suggested rate or less without any prior approval from
project staff. Participants could
also contract to pay up to 50% more than the suggested rate for a discreet
service, but they would receive a call from the Site Coordinator with
information on less expensive services. Costs
beyond the “suggested rate plus 50%” level had to be approved by the Local
Referral Committee or project director.
This
assumption remains one of the most complex issues that were raised during the
project. We found that while
participants found the suggested rate lists very helpful,
suggested rates quickly became standard rates, with providers expecting
to get at least the suggested rate. Only
rarely were participants able to negotiate for lower rates than those suggested
in the contracts and only a handful of providers saw the value in offering
services at rates lower than those suggested.
However, it remained unclear to us how to resolve the dilemma.
Participants need to have information concerning reasonable costs and
service providers have not had much experience or motivation to move to a more
market-oriented, individualized, customer approach. At this point, we still recommend that suggested rates be
offered to participants and that providers be given assistance and encouragement
to shift to a customer focus.
3.
We felt that if persons with significant disabilities had control of
financial resources that they could easily buy the services they needed in a
market-like service economy.
Traditionally,
persons with significant physical disabilities have been the most under-served
group in vocational rehabilitation, even within supported employment.
These individuals are often overlooked in favor of other persons with
disabilities who experience a less significant impact of their disability
relating to employment. We felt that if this group had access to funding, that
providers would respond. It seemed
reasonable to assume that the funds would be a magnet to attract the needed
services as long as the rates to be paid were reasonable.
In our case, they were better than average, especially for job
development services.
We have
referred to this issue as the “Field of Dreams” assumption -- “If you fund
them, they will come.” In this
case “them” are the participants and “they” are the providers.
Unfortunately, our experience did not turn out this way.
From our perspective, providers remained as reluctant to engage
participants with significant disabilities with money to spend as they had in a
more traditional service relationship. In
fact, access to providers who were willing to offer job development
representation services to project applicants represented our most challenging
issue. At first we simply blamed
providers for their lack of response. As
we listened and observed more closely, however, we began to notice factors that
might be contributing to this reluctance.
First,
nearly all initial providers were traditional service agencies in the DD field
with on-going contracts with state funders to provide supported employment to
persons served in-house. The
relationships and incentives of tradition services are markedly different than
those in choice and as long as service agencies had their traditional contracts
there was little motivation to change perspectives to work with a few choice
participants. Similarly, agencies
that did contract with choice participants did little to shift staff roles.
A job developer, for instance, is traditionally funded by VR or DD funds
within a typical agency. When a
choice participant signed a contract with such an agency, the job load
associated with the participant was simply added to the existing duties of the
job developer. When these competing outcomes were present, the choice
participant was almost always considered as an after-thought and was forced to
wait.
Finally,
providers have been charged by funders with the responsibility of assuring
outcomes that are consistent with the needs of the funding source. This relationship is almost reversed in choice.
Rather than pleasing funding sources, providers must please participants.
The shift is very challenging for providers and one that is not
consistent with other services.
We cannot
say that we successfully resolved the issues associated with traditional
providers. We were, however,
successful in finding an alternative -- non-traditional providers.
Throughout the course of the project, we recruited and trained a host of
small, independent providers who became the primary source of services from
project participants. Overall
participants contracted with 64 independent providers as opposed to 19
traditional, agency providers.
4.
We anticipated that the clarity necessary to deal with the tough
questions raised by choice would best be gained by comparing our participants to
regular customers doing business with generic services in the community such as
contractors, lawyers or retail outlets.
The
relationship between persons with significant disabilities and service agencies
in the rehabilitation field has been hierarchial and has rarely been truly
balanced. This type of relationship
often results in a parental or “professional knows best” attitude with
service recipients. The changes
that are implicit in choice, however, call for a shift towards more of a
balanced, horizontal relationship. Since
our traditional practices have not included such relationships, we decided to
base our perspectives on the
generic
relationships that exist between businesses and customers with money to spend.
We found
that this generic focus was extremely effective in resolving the numerous
unanticipated issues and questions that arose throughout the choice
demonstration. These analogies gave
us insight into negotiating contracts, including providers in the planning
process, negating contracts, resolving conflicts and clarifying expectations.
5.
We assumed that persons with significant disabilities, even those with
intellectual disabilities, could make effective choices if given assistance from
volunteers and third party advisors and that “informed” choices would be
“good” choices.
The
regulations guiding the RSA demonstration authority were explicit in directing
projects to take individual choice to a higher standard -- informed choice.
There must have been concern that when the public dollar is used for
purchasing goods and services that personal choice should be influenced by
useful facts and professional perspective.
In the early ‘90's it certainly remained an open question whether
persons with disabilities would make good choices with proper information and
whether persons with significant intellectual disabilities could be counted on
to make choices at all.
Our
experiences indicated that both assumptions were valid.
As long as participants had access to supports from friends and family,
paid third-party advisers and optimistic staff, the choices they made were
responsible, even frugal, and in keeping with a professional perspective.
In fact, the role of family or personal support seemed to be a key
ingredient for success. While almost all participants utilized a paid advisor, the
benefit of the advisor varied in relation to the non-paid supports the
participant received. The greater
the personal support, the better the advisor was able to offer individualized
assistance. Persons who had less
personal supports seemed to have somewhat
standardized experience. Additionally,
approximately 40% of the persons in Choice Access reported that they had some
degree of intellectual disability. We could determine no difference in the choices made by that
group and those without intellectual disability.
6.
We considered that the role performed by our site coordinators could
define a new role for VR counselors in a choice-based system.
The
traditional role of a VR counselor is a multi-faceted one with responsibilities
that include counseling, advice, gatekeeping and approval associated with
finances and outcomes, determination of appropriateness for services,
responsibility for closures, contracting with service providers and meeting the
needs of the system. We assumed
that there would need to be a facilitating staff person assigned to each
participant, but that the role would need to be very different than a typical VR
counselor’s. Components that were
similar included a) the management of a caseload of participants (from 60 to 90
participants by the end of the project), b)
recruitment and
intake of
participants, c) providing
information on how the system works, and, d) responsibility for collecting data
on participants.
However,
there were also major differences between the roles we felt were necessary for
choice. We felt that the Site
Coordinator should not be the primary source of information and advice.
Instead, they assisted participants to recruit and hire advisors and, as
appropriate, volunteer supporters. Coordinators
never made choices concerning the selection of providers, the outcomes
identified by the participant or the degree of satisfaction felt by the
participant. They had to encourage
providers to be interviewed by participants rather than approving them for a
qualified list. Perhaps the most
challenging difference was that coordinators could not approve payments for
providers without first getting approval from the participant. We feel strongly that these and other similar role changes
are consistent with a valued, evolving role for VR counselors as they work to
bring real choice to the rehabilitation process.
7.
We felt that service providers would willingly learn and embrace an
individualized, choice-directed employment approach if they received sufficient
training and support.
Based on the
dismal numbers of persons with significant physical and multiple disabilities
included in the national employment data, we felt that service providers would
eagerly anticipate and subsequently use a tested, effective process such as the
one offered by our project’s technical assistance personnel.
The approach was based on a sequential set of outcomes that allowed for
provider pay along the journey towards employment. These approaches had been
used effectively for six years by previous UCPA employment projects to
individualize the discovery, planning and job development process and to avoid
the barriers in arbitrary job descriptions for persons with a significant impact
of disabilities.
In reality,
we found that providers struggled with the degree of individualization required
by this approach and they often fell back to labor market, general strategies in
the areas of job development and job site facilitation. A high degree of staff oversight of providers, continual
training on the strategies and clear and even tough-minded advocacy by
participants, advisors and volunteer supporters was necessary to keep providers
focused on quality individualized services.
8
We assumed that payment for outcomes was a surer route for participants
to achieve their employment goals than open-ended, hourly payments for service
categories.
Traditionally,
funding sources contract with providers for employment outcomes that are based
on either hourly rates or “slot” payments that are monthly or yearly.
In these instances, providers receive payment whether outcomes are
provided or not, as long as associated activity was performed by providers.
This arrangement has come under scrutiny in the ‘90's with many funders
shifting to “fee for service” arrangements in which providers receive
payment upon completion of employment outcomes.
A similar concept has been referred to as “Milestones”, whereby
funders pay providers based on the completion of concrete steps towards
employment.
Since
countless persons with significant disabilities have worked to gain access to
employment services only to find that the time ran out due to lack of funding,
we decided that the best way to assure outcomes was to link provider pay to
discrete outcomes related to employment. In
a process somewhat similar to Milestones, the UCPA project identified a set of
sequential Core Employment Services including the Vocational Profile, Profile
Planning Meeting, Job Development, Job Analysis and Job Site Facilitation as
well as Related Employment Services such as Personal Assistance, Equipment,
Transportation, and Therapies. These
services were only be paid upon completion of the service and delivery of the
product. We also included the
Employment Advisor to be paid on a retainer basis, similar to a lawyer or
financial advisor.
9.
We suggested that a discovery process would offer an alternative to
traditional comparison based evaluation procedures to drive employment planning.
Persons with
disabilities have traditionally had to prove their fitness to work by passing a
battery of evaluation and assessment procedures in a manner that indicated their
feasibility. The choice
demonstration began less than year from the passage of the 1992 Amendments to
the 1973 Rehab Act by Congress. In
the ‘92 Amendments, Congress directed VR to remove the feasibility
determination and to generally presume applicants feasible for employment
outcomes. However, the regulations
had not yet been written in 1993 to spell out how this shift should occur.
The UCPA project embraced an expectation of feasibility and responded to
the need for information on participants through a discovery approach using the
Vocational Profile Strategy instead of a more traditional evaluation and testing
approach.
We found the
Profile Strategy to be fully sufficient to provide service providers all the
information necessary for individualized employment planning and personalized
job development. The time required
to complete a profile ranged from 11.5 hours to 18 hours.
This process was compatible with the payment for outcomes approach
described in Assumption # 8.
10.
We anticipated that choice-based services would result in quicker
outcomes for participants that traditional services.
One of our
fundamental assumptions at the beginning of the choice project was that offering
participants control of resources would speed up the attainment of desired
employment outcomes. We felt that
by shifting control to participants that we placed them in the driver’s seat
and would bring a degree of personal advocacy and responsibility to the process.
However, it
didn’t happen in that manner. Instead
of speeding up the process, control of resources by participants seemed to have
a complacency effect on many participants.
Once they knew the money could not be touched, except through the
delivery of outcomes that they approved, many participants seemed to relax their
advocacy efforts and accept a lack of movement by providers.
This was completely unanticipated, although, in retrospect, it follows a
certain logic. Sometimes we’re at
our most vulnerable when we are closest to our goal or when a major hurdle has
been reached.
Beyond this,
we must recognize that choice and true individualization are simply messy
concepts. When we welcome people to
bring into their quest for employment all their hopes, needs, dreams, negatives,
and perspectives and then add to the mix the powerful ingredient of prerogative,
things are going to become complex very quickly.
This complexity, and the associated time delays, must be accepted as a
natural part of offering choice service.
11.
We thought that participants and project staff could effectively and
easily deal with the payment approval process, if a “boiler-plate” design
was offered.
On the
surface it seemed so simple and straight-forward, participants should only pay
for services that met the terms of the contract and satisfied the customer.
This perspective is consistent with all generic customer/contractor
relationships. We felt with
assistance from the site coordinator and advisors, participants could easily
approve payments for services rendered to them and that site coordinators could
effectively monitor such approvals and process the requests in an efficient
manner. We provided participants
with a detailed handbook of sample, boiler-plate contracts and approval forms as
well as samples of quality service products.
We felt that the handbook, along with the advisor supports, would be
sufficient to assist participants to handle the process of getting providers
paid for services.
The reality
was that this area was one of the most challenging in the provision of
choice-based services. It became
clear to us that no one in the system -- providers, project staff, advisors or
participants -- had much experience handling specific contracts that contained
details such as signatures, monetary rates, statements of work and approval
components. This inexperience led
to a certain amount of laxity in processing payment forms which, in turn, led to
numerous delays in getting checks out to providers.
The delays were also caused by a lack of understanding of the role of
documentation on the part of providers. Participants
often received payment requests without receipts, required products or data
forms. Providers would routinely
submit payment requests for services not described in the Service Contract with
the participant. In addition
to their lack of experience with contracts, participants and staff alike found
it difficult to negotiate for quality when a provider was pushing for payment
approval.
While we
were able to address these concerns with constant project-level oversight,
increasingly clear contracts and support, future efforts to provide choice must
recognize the underlying complexity associated with placing payment approval
responsibility on the shoulders of participants. Participants and their supporters need training in the
generic strategies that all customers need to assure satisfaction and quality
and they need support from paid advisors and project staff to deal with the
difficult situations that often arise when a provider wants to be paid.
As the
availability and use of home office technology increased during the ‘90's, we
also encountered a wholly unanticipated challenge in this area -- participants
did not typically have personal access to the computers, fax machines and e-mail
accounts that might have increased the speed with payments could be processed.
As payment and form systems advance with the use of technology, it is
critical that customers have access to that technology in order to effectively
participate in the benefits.
12.
We assumed that the third party advice component was sufficient for
personal empowerment in the area of consumerism.
This issue
is similar to the payment approval issue addressed in Assumption #11 but it is
much broader is scope, encompassing the areas of empowerment, consumer
responsibilities, satisfaction and conflict resolution.
From the outset we anticipated that persons with significant physical
disabilities and their families would find it challenging to shift from a
“client” role to that of a customer with money to spend.
We assumed that providers would likely return to a traditional service
provider relationship and that participants would need support from a
third-party source to deal with these challenges.
In addition to the information, options and opinion we expected from
Employment Advisors, we also felt that they could run interference for
participants when conflicts
arose.
Along with support from project staff, we were confident that the advisor
role would be fully sufficient to address any “customer” problems that might
arise.
As with many
other assumptions, this issue proved much more complex than we anticipated.
We found that advisors were often as inexperienced as everyone else in
handling the new challenges created by choice.
Advisors needed as much training and support as providers and yet it was
not always a good fit to provide training for both parties at the same time. This meant considerably more training was required than
originally anticipated.
We also
found that the relationship between the advisor and the participant was complex
in a subtle way. When participants
were applying for the project, we noticed strong self-advocacy efforts on their
part to gain access to project services and to get started. However,
once participants hired their advisors, we began to see a pulling back in the
area of self-advocacy in favor of support by advisors.
Some of this is natural and to be anticipated, but its very easy to
experience the downside -- a return to “client” status by participants in
which they wait for others to make things happen.
This awareness created a dilemma for us in that we were strongly opposed
to participants having to possess the skills and motivation necessary for strong
personal advocacy as a pre-requisite for services.
We were equally determined that they should not have to attend
pre-service empowerment training as a condition for selection.
However, we
discovered that choice-based outcomes are affected by the degree of personal
responsibility and sweat equity invested by the participant and their closest
supporters. We also had to admit
that the body of generic information that defines an effective customer was both
critical and missing from many participants.
Our resolution was to offer a series of free, optional trainings on
generic consumerism strategies for participants, family members, advisors and
other supporters. In a future
efforts to increase choice, we suggest far more attention to this critical area.
13.
We made the assumption that persons remote from project sites could get
the supports they needed from a volunteer support circle and from paid advisors.
During the
last year of the project, RSA gave us permission to extend the scope of our
project from geographic areas surrounding our three project cities to a
nationwide scope. We proposed to
include thirty participants in areas remote from our project site. This status meant that there would not be a Site Coordinator
to assist those individuals with the supports that were available to other
participants. We did assign a
project level staff person to assist remote participants by phone, fax and
e-mail, but this was not a local support. To
remedy this, we required that each application we received from persons wishing
to become a remote participant contain a local, volunteer support circle that
would ideally provide the supports not available from a site coordinator.
All remote
applicants were able to identify a support circle as a part of their
application. However, the
composition of the groups varied widely. Some
participants chose family, close friends and volunteer professionals while
others primarily selected service providers.
Overall, we found that the support circles did not function as
anticipated, as an effective advocacy and support function.
Rather, strong individuals within the support groups -- typically one
person from each circle -- emerged as the key to success.
These roles were filled by participants themselves, parents, close
friends, local professionals not connected with the individual and staff persons
from a service agency associated with the applicant. The most common and
effective leaders were parents who took the responsibility to make things
happen. Also effective were local
professionals not connected to the applicant.
These were persons who had some degree of control of their time and had a
relationship and vested interest, though not a responsibility, to help the
applicant become employed. The
least effective leader was a staff person connected to an agency that currently
or formerly provided services to the participant.
These persons found it difficult to advocate for participants over the
needs of the agency and they also had problems in following through with
commitments.
In
retrospect, we would still encourage the development of a support group, but we
would stress the importance of identifying and recruiting a strong lead person
to direct the process.
14.
We felt that self-employment was of minor importance and would likely
lead to isolation of participants.
Prior to the
early ‘90's self-employment was rarely an outcome of supported employment
services for persons with significant disabilities.
Prior to that time, self-employment was largely characterized by either
retail businesses developed as a result of governmentally mandated set-asides
for persons with milder impact of disability in their lives or in telemarketing
of household goods by persons with more significant disabilities.
UCPA had avoided encouraging self-employment due to a variety of reasons:
a)
We feared that most self-employment business would be at home, isolating
participants from integrated interactions with regular co-workers.
b)
We were concerned that traditional providers knew little about the
strategies and skills needed to start a new business.
c)
We felt that the choice and direction of self-employment would likely
come from some service provider’s desire to own a business rather than the
participant’s passion to become an entrepreneur.
d)
We had heard that the vast majority of new small businesses failed within
a year or so of their inception.
For these
reasons, the UCPA Choice Access project did not anticipate that self-employment
needed to be included as a possible outcome for participants.
However, as the project unfolded and as other projects, particularly the
one managed by Vermont’s state VR agency, began to share their outcomes, we
came to realize that we needed to reconsider our assumptions.
Input, experiences, and research by other choice projects indicated that
a number of our fears were unfounded. For
instance, we found that it was a myth that most new businesses failed in their
initial year. In fact, adjusting
for business being sold, voluntary closures, retirements and other similar
factors, the failure rate of new business over a five year period is no worse
than that associated with supported employment retention rates.
We also acknowledged that all self-owned businesses would not be
isolated. In fact, business
employees and customers can offer the same opportunities for integration as
co-workers and supervisors.
But perhaps
the most compelling reason to embrace self-employment as an option for
participants was that, as participants repeatedly said, “Its my choice, it’s
what I want to do.” If we were to
truly offer choices to participants, we simply had to extend not only the
opportunity but the encouragement for anyone who desired that outcome to be able
to pursue it. Overall, 21% of
participants (29 of 134) who became employed chose self-employment in our
project.
15.
We thought that existing service agencies would be a key factor in the
success of project participants.
As we
designed the proposal for Choice Access, we surveyed the existing local
providers in close geographic proximity to each site.
Our assumption was that those traditional providers would comprise the
most utilized resource from which participants would purchase services.
In a survey of local service providers that offered supported employment
to persons with significant physical disabilities we found a total of 28
agencies among the three sites -- 11 in New Orleans, 9 in Detroit and 8 in
Pittsburgh.
However, by
the end of the first project year only 19 of those agencies had applied to be
providers -- 7 in New Orleans and 6 each in Detroit and Pittsburgh -- and few
were being chosen by participants. Our
initial response was to re-double our efforts in recruiting agency providers and
in assisting them to make themselves available to prospective participants.
However, agency providers seemed reluctant to enter into contracts with
participants, especially in the critical area of job development.
This
unanticipated circumstance created a need for us to recruit, encourage and
incubate new, smaller and non-traditional providers.
We began this effort early in Year II of the project and continued our
recruitment throughout the course of the project. By the fifth year of project services, the number of active
agency providers had decreased to 15 while the number of non-traditional
providers had grown to 64 -- 24 in New Orleans, 19 in Pittsburgh and 21 in
Detroit. Without these new
providers, the outcomes of our project would have been considerably reduced.
By the project’s end, 14% (9 of 64) of the non-traditional providers
had started employment agencies and were offering services beyond the scope of
the Choice Access Project.
16.
We assumed that a volunteer, citizen committee could make effective
decisions about enrollment, budget revisions and conflicts for participants.
As we looked
at the procedures that had been traditionally used to offer persons with
disabilities access to scarce, public services, we noticed that people were
selected either by proving their competence through evaluations, by being the
“next in line”, by becoming a squeaky wheel or by knowing someone in power.
Since we knew that the opportunity to get access to a personal budget
worth nearly $10,000 was likely to attract more persons than our small
demonstration project could accept, we needed a process for selection that had
integrity and that was as fair as possible.
Our solution was to recruit and impanel a volunteer citizen committee
comprised of local stakeholders described earlier in this report (see page 6).
We not only
discovered that the three Local Referral Committees representing each of our
three project sites performed their responsibilities in an effective and
efficient manner, they also willingly expanded their duties to include resolving
local conflicts between provider, advisors and participants as well as
considering, revising and/or approving budget revisions and participant
re-applications. Each committee
consisted of an average of seven members and, remarkably, stayed together with
less than 10% turnover across the entire 6 years of project services.
17.
We hoped that families would work to support participants in their quest
to become employed.
We began
Choice Access with an assumption that, if people controlled their resources,
families and informal supporters would feel empowered to assist
participants to become employed rather than depending on agencies to do the job
for them. The entire process used
by UCPA was one that welcomed families and friends into the process.
The discovery component of the Vocational Profile started at the
participant’s home and values the perspectives of family, neighbors and
friends rather than arbitrary performance on tests and evaluations.
The Profile Planning Meetings were held only if more people not paid to attend could come than those paid to attend.
The blueprint for job development was developed through input from family
and supporters and provided a clear indication as to whether the job developer
found an appropriate job for the applicant.
As the
project unfolded, we found that family and non-paid support was perhaps the most
critical variable for success. Families
routinely took the lead in making calls for persons who found communication
difficult, they provided transportation assistance to meetings, interviews and,
in some cases, to work, and, in about 10% of the total cases, family members
became advisors to participants.
18.
We felt that the purchase of technology and academic training was best
considered in relation to a specific job as opposed to a generally perceived
need.
The
relationship between assistive technology, academic training and employment
opportunities for persons with significant physical disabilities has been
discussed for years. For years
there has also been a “chicken and the egg” argument concerning which comes
first -- is it necessary to have technology or education prior to the onset of
employment, to make employment possible, or is it necessary to have a job in
order to identify the technology or
schooling needed to perform the specific job they have obtained?
In the area of technology, it depends on what the technology is to be
used for. Some technology such as
power wheelchairs, scooters, and augmentative communication devices relate to
general needs for participants and can be purchased prior to employment.
Other purchases such as specially designed desks, reachers, computers,
and speciality software are probably best purchased after a specific job has
been developed. A similar case can
be made for academic preparation.
Complicating
factors to this issue are that technology and schooling are expensive, often
costing $10,000 to $20,000, and funds for employment, such as those available
from VR, are to be used in conjunction with employment, not in a general life
manner. In a number of years of
discussions with persons with significant physical disabilities, we found a
troubling syndrome relating to the relationship of participants, VR counselors
and access to technology and secondary academic opportunities. VR counselors have recognized for decades that assisting
persons with the most significant physical disabilities is a challenge.
This challenge often resulted in a lengthy, sometimes open-ended, period
of time for persons to become employed. However,
over time, those participants continued their advocacy to become employed and
typically wanted something tangible from counselors.
It was not unusual for counselors, confronted by lack of an employment
outcome and by continual advocacy by the participant, to offer to purchase
either the technology desired by
the participant or secondary education services or both.
Service agencies such as UCPA would often encounter angry young adults
with significant physical disabilities who had first rate mobility and
communication technology or a college degree (sometimes an advanced degree) or a
combination of both, and yet remained unemployed.
Our decision
in Choice Access was to limit technology equipment purchases and academic
preparation to the specific needs of an actual job. If a job required a non-speaking applicant to communicate
with customers, an augmentative communication device would be approved.
If a manual wheelchair user needed a power chair or scooter to deliver
products within a large company, that device could be purchased.
If an employer required that an applicant be proficient in a data base
software program, the tuition for the course could be approved.
If a participant needed mobility or
communication
technology for general life purposes, assistance was provided to seek funding
from Medicaid, local charities or other sources.
This
decision was sustained for most the project’s life.
However, in the last year of the project and in the extension year, we
began to consider some flexibility in each area. We still feel that both technology and academics are best
considered in relation to a specific job, choice based services require a
careful consideration of the gatekeeping decisions that might restrict access to
participants.