Washington
State DVR made a variety of assumptions when
the original Participant Empowerment Choice demonstration grant was written.
The Division based the grant on those assumptions.
As with all assumptions, some were more accurate than others.
The next section examines the project’s main assumptions.
It delineates which of those assumptions proved accurate and which
required modification over the years.
In a traditional vocational rehabilitation system, the focus of control in the decision-making rested with “the system” and the vocational counselor, and not with participants and whom they chose. PEP created a system in which the counselor’s role was an advisor and/or mentor. In other words, PEP wanted to shift the power from “the system” and counselor to the participant and their significant others. The basic strategies implemented to support this assumption were accurate.
The
assumption however, was too narrow. When the grant was written, strategies were developed
that focused on how to change the system but
little thought was given to what the participant brought to the table.
The program quickly realized that it needed to take into consideration
the amount of control, responsibility, and risk participants were willing to
accept. Each of these factors, from
the participant perspective, brought an array of choices and decisions.
All participants went through a maturation process around the acceptance
of how they wanted to control their rehabilitation.
Counselors
also went through a maturation process of learning how to help participants take
control and to provide the necessary support without falling into the role of
being directive. Many participants
demanded that the counselor take the control because that felt safer.
They knew how to work with professionals when the professional had the
control. And professionals know how to work with participants when they had
control. Staff had to learn a
balancing act of how to provide the appropriate amount of support, information
and advise without overwhelming the participant or taking control.
No one on staff was prepared for how difficult it was to master that
balance.
The process had to be individualized. The amount of control and involvement a participant wanted or
would accept varied based on their individual needs, experience and energy.
This was a larger issue than originally envisioned in the initial grant.
Unfortunately, PEP did not find informed choice to be a linear process or
a simple structure that could be implemented. Implementing informed choice was difficult, messy and had
many misguided or false steps. Many
participants needed to encounter the difficulties in order to learn what made
the best sense for them vocationally.
The program needed to experience the difficulties so that it could truly
comprehend how complex it is to help a participant take and accept control.
The
project struggled in setting the correct parameters for participants so they
could accept the responsibility and control for their rehabilitation either
initially, or over time. Many
participants who came to the project had either made poor choices in the past
and were afraid of having the control. Others
had never had the opportunity to be in control of their services and found it
uncomfortable. The majority of participants needed additional supports to
effectively drive their services. The
project sought to help participants figure out how to accept the control and
responsibility. Staff had to
subscribe to the belief that all participants wanted the control and
responsibility. It was staff’s
job to help participants figure how to accept control and responsibility. Otherwise, it was too easy for staff to fall in the
trap of thinking that a reluctant
participant did not want the control or responsibility.
Considerable
time and energy went into redesigning the program structure to ensure both
systematic supports were in place and individual strategies
were implemented that allowed the
participant to be successful in implementing the control over
their rehabilitation. The
tools and approaches section of this report includes
individual tools used with participants to help
them evaluate their support needs to control
the process.
PEP provided information in a variety of formats such as written, oral, pictures, experiential and a combination of all of the above. The project soon learned that providing accurate information in a format the participant understood required more that just offering information in a variety of formats.
First,
it required that the counselor understood how the participant processed
information. In order to achieve
this, extensive “up front” time had to be spent getting to know the
participant. PEP relied less on
assessment reports traditionally used in vocational programs.
As a result, PEP counselors spent the majority of their time with
participants in the initial stages of the process and the time spent tapered off
by the time the plan was developed.
The
knowledge counselors obtained early in the
process gave them the ability to gauge the participant’s reaction to both the
information and who was providing the information.
PEP found this to be critical because many participants were so used
to being “good participants” that they accepted information from someone in
authority without questioning it. A
necessary component of understanding information is being able to process it and
question the source. Understanding
how participants processed information allowed the counselor to help
participants figure out what type and source of information would be most useful
to them. The counselor
structured the information in a format that the participant could understand,
and analyze.
Another
important element of providing information is who provides the information.
When the grant was originally developed, PEP did not realize that it was
important to consider who provides the information to participants.
The ability to hear and understand information is not a simple skill. It becomes a very sophisticated skill when information
is difficult or complex to understand or is contrary
to what the listener thought. It is
then that the provider of information becomes critical.
The
participant must trust the speaker’s information as
valid. PEP saw valuable information
quickly discounted by participants when they doubted the speaker. Trust
required that the speaker have credibility with the participant.
Credibility is established either due to a relationship with the
participant or due to an expertise on a subject.
This
realization impacted how PEP structured its services.
Counselors spent up-front time with participants establishing a
relationship. Counselors clearly explained
their own bias around the information they were providing and the rationale for
that bias to the participant. Participants
were encouraged to obtain information form a wide variety of sources prior to
making a decision. The rehab team
approach allowed participants to be able to evaluate the information from a
wider perspective. As a result, the
PEP’s counselor role was more of facilitator of information.
In traditional programs, vocational counselors have been expected to identify a problem and provide the participant with a solution, explaining the benefits of that choice. As a facilitator of information, the PEP counselor provided the information the participant identified as important, and then helped the participant analyze and choose from an array of solutions. When the participant determine what information would be useful, the solution were not always efficient or straightforward. It did however, result in solutions participants were committed to and ones that focused on their strengths.
Peer
support was outlined in the original grant as a tool to help participants obtain
support in decision making. Initially,
the Division did not realize just how effective this approach could be in
helping participants obtain and process information.
PEP found that peer support groups were very beneficial to participants.
The peer support groups ran once to twice a month during the entire
duration of the grant. Groups were
co-lead by PEP’s independent living staff and a participant.
Information that was difficult to hear or process with a professional
frequently became easier when spoken from a peer that had experienced a similar
situation. Information around how
to present your disability to an employer or the issues one has to face when
they are self-employed were frequently heard better from a peer.
The project found peer support groups to be an extremely effective approach for participants who were stuck in the rehabilitation planning phase and who seemed unable to make a decision. The effectiveness of the peer support groups surprised staff. PEP found the most important elements that the peer support provided to participants were:
¨
the strength of group
dynamics
¨
hearing information
from peers,
¨
being a safe place to
express fears and disappointments and
the opportunity to
establish relationships and obtain support.
Many
participants PEP served were fairly isolated and the relationship formed in the
peer support group provided one of the main supports in their life.
Participants also found the training seminars PEP held on a variety of topics to be useful. Seminar topics changed and expanded throughout the five years, based on participants’ needs. For example during the first year of the project a large portion of participants were homeless so numerous seminars focused on housing resources and how to obtain them. During the fourth year of the project there was a strong focus on self-employment.
The
seminars were taught by a variety of people, including community businesses,
resources and experts, PEP staff, and participants with a particular expertise.
The training seminars not only provided information to groups of
participants, they also exposed participants to a host of networks within the
community that participants could expand upon.
Staff at the Housing Authority, Social Security, Employment Services or a
private nonprofit were easy for participants to contact when they had a real
person associated with the resource. During
the initial seminars on housing resources, Fannie Mae’s representative
presented a program designed to help persons with disabilities purchase their
own homes. By the end of the
program six participants utilized this program to purchase their own home.
The original assumption that if participants received information in a format they understood, they would make decisions that made sense for their lives was correct. Not all decisions participants made led to the outcomes they wanted. The vast majority of decisions made sense for the participant and the outcomes that they wanted.
The
traditional vocational rehabilitation system places too much of the power and
control in the hands of the professionals.
Professionals tend to have the final say in the decisions that should be
participants’ decisions. Frequently,
professionals only consider the part of the participants’ lives that impact
their expertise, i.e. rehabilitation professionals look at the vocational
aspects of a person’s life, medical doctors look only at the medical aspects,
etc. The choices that are typically
given to the participant are at the end of the process rather than throughout
the entire process.
In
a traditional system, the system determines what is considered a success, not
the participants. PEP strived to
structure a system that set the parameters but then helped the participant take
the control at every step in the process.
PEP developed the concept of rehab teams to help the participant take the control, to receive support and to help them manage the planning. A rehabilitation team was a group of individuals that the participant invited to be part of his or her vocational planning. The intent was that the participant knew these people well, trusted them, and they would be invested in the participant’s success.
The team’s role was to help the participant develop a vocational plan that made sense and to determine what resources to allocate to implement the plan. The teams used a variation of Futures Planning. Counselors usually met with their participants at least three times prior to the first team meeting to help the participant prepare for the meeting. Counselors worked with participants on an array of topics. Examples of some of the topics are:
¨
What the participant
needed from their team, and how they should ask for it
¨
What type of work
environment best suited the participant
¨
What the participant
viewed as their strengths and skills
¨
What the participant
was willing to do towards their plan
¨
What accomplishment
the participant was most proud of
¨
What concerns and
issues the participant had
¨
What supports the
participant might need
¨
What were the things
the participant needed to think about before taking a job
¨
What information did
the participant not want to share with their team
Inviting individuals from the participant’s life to help in planning was effective and it removed the counselor from the role of resources and information gatekeeper. The counselor was another member of the team who offered their expertise and ideas as any other team member.
The team approach strengthened the planning process. The plans realistically reflected whom the participant was and what they wanted to achieve. The participant owned the plan. It confirmed for participants that they were experts about themselves and could succeed in controlling their own lives, including their vocational rehabilitation. The process was participant centered and proceeded at the participant’s pace, not PEP’s pace. After every team meeting, the team members and the participant filled out an evaluation. The evaluation asked a variety of questions focusing on:
v Who had control of the meeting
v How effective was the meeting
v Were the topics the participant wanted discussed,
v Did the participant feel they were closer to their goal
v What changes did they suggest?
Ninety
percent of PEP participants felt the rehab team was useful.
Based on the feedback PEP received from the rehab team evaluation, they
modified the process, i.e. shortened the length of team meetings, had
participants set the agenda after the first meeting, and explained the role of
the team to team members prior to the first meeting.
The
rehab team approach is not without its downsides.
It took the program the entire first year to develop a system of futures
planning that proved effective. (See appendix: Team Questions, Team Information,
and Team Process.) Some
participants did not want anyone to know they were involved in the program.
Some had burned all their bridges and felt they did not have anyone in
their life that could or would serve as part of their team.
Some participants were just reluctant and reticent to involve individuals
from their world in the planning process. PEP
had not expected this resistance. PEP
staff worked with participants to help them determine who in their lives might
be an effective team member.
PEP
discovered that it wasn’t always effective for the participant to have a rehab
team at the start of their program. While
most participants needed more support in the up-front stages of the
rehabilitation process and during plan development, individuals going to school
often needed support and the team process when they finished school.
In the fourth year of PEP, participants were allowed to choose at what
point they wanted to start the team process.
PEP designed the rehab team process so that the counselor never facilitated their participants’ teams. Another staff member would facilitate the meeting, allowing the counselor to participate in the team process as one member of the team. That way, the counselor had no more power than any other team member.
Facilitation
of a team was hard work and required an abundance of skills.
The facilitator had to be attentive to all the team members, hearing what
was being said and what was being implied. The facilitator needed to restate comments in a neutral or
positive manner and keep the team process moving while ensuring that the
participant obtained the support and information he or she needed to make
decisions.
Not
all teams were effective. PEP
allowed participants to chose whomever they wanted to be on their team and
sometimes this resulted in a team with individuals who were not beneficial to
the process. Frequently it was a family member or close friend who had a
very different agenda for the participant. PEP counselors worked with the
participant to clearly state what they need from their team.
The facilitator reminded the team of the ground rules, specifically that
the participant made the final decision and the team played a supporting role.
In a few cases the team had to be disbanded.
It would have been good if PEP could have intervened and said that
certain individuals were not allowed to be on teams. Counselors did advise
participants on the ramification of choosing certain team members and the impact
the choice might have on them successfully reaching their goal. Some participants clearly wanted an individual who was not a
wise choice. The project never told
participants they could not have a team member. PEP could not figure out how to keep the integrity of
allowing the individual to chose who was involved in the planning and then
restrict the choices.
Sometimes
an effective team member would get so frustrated with the limited progress a
participant was making that they would quit the team or remain on the team but
their relationship with the participant would become strained.
Many of the individuals PEP served had limited supports and networks.
When the team process strained those supports, it was the exact opposite
of the program’s intention.
PEP developed all kinds of informational sheets for team members and
worked extensively with participants to think about whom they invited on the
team in an attempt to prevent strained relationships.
Another downside to the rehab team process was that many participants were used to professionals deciding for them and did not want to invest the energy it took to control the process. These individuals needed the process to be broken down into very small steps so that it did not feel overwhelming. For these participants, it usually took an exceptionally long time to obtain their vocational goal. In addition, some participants found it risky to accept the responsibility of controlling the process. To some, it was easier to blame others if things did not work out. In PEP’s model, the participant was in charge and was responsible for success or failure.
PEP
worked with potential team members so they understood the process, the rationale
behind it and the expectation of team members.
PEP requested that all participants try the team approach before
rejecting it. Even with all the
strategies that were implemented, the team concept did not work for some people.
The approach did not work well for individuals who knew what they wanted,
had a plan, and just needed limited support.
It also did not work well when participants chose team members who were
not invested in the participant not succeeding.
In the last year of the grant, training on how to facilitate a team meeting was available to interested participants who had been through the team process. These trained participants were available to participants to facilitate their team meeting instead of PEP staff. No participant was interested in using them. This may be due to a variety of factors; the lateness that the project brought on trained participant facilitators, the stretch it was for some participants to have another participant facilitate their team and the comfort level participants had with staff.
The
team process taught many participants how to develop and use their networks to
obtain. This was particularly
helpful to individuals who were used to obtaining support from “the system”.
Ninety
percent of PEP’s participants believed that the rehabilitation team was an
effective approach in their rehabilitation, five- percent liked the concept but
did not believe it worked for them, and five percent found it ineffective. The Division is currently doing a two-year rehab team study
research project to determine how this approach will work within the larger
vocational program. See appendix
for a copy of the study.
At the time of writing the grant, the Division did not understand the complexity of the connection between participants controlling their money and informed choice, but we knew intuitively there was a connection. We made the assumption that if participants were going to have control; then they needed to know how much money they could spend. The participant and their rehab team needed to be the ones making the decisions on how much to spend in the plan.
PEP structured the project so each participant had a starting point for a budget that they could use to implement their plan. Each participant started with an average of $3,330 for his or her plan. The $3,330 was the average rehab cost in the Seattle area in 1992.
As the project evolved, staff realized that each participant needed an individual budget that they had ownership of and could track. However, the project should have structured it so each budget was driven by the plan. Setting an average, based on past expenditures to give participants some parameters, did not increase participant’s control over money or dictate fairness. Because the project served one hundred and seventeen less participants than originally projected, it was able to allow the plan to drive the budget in the last two years of the project.
PEP found that some participants spent more than $3330; some spent less. The concept of an average was difficult for a few participants to understand. They felt that they were guaranteed that amount of money regardless of their vocational needs and developed a plan to spend every penny. The vast majority of participants understood the concept, liked having a budget to work from, and planned accordingly to reach their goal.
Having
control over money resulted in interesting reactions from participants.
Many participants did not believe they really had control over their
budget and would buy an item just to test if they really had control. Almost
every participant brought at least one piece of clothing in the start of his or
her plan. Once
participants believed they had control over their budget they became very
thoughtful and careful of their expenditures.
People truly viewed it as their money and were far more cautious and
careful about spending money than staff would have been.
Most participants worked hard to get the best deals and happily shared
that information with other participants. Participants frequently got better deals than project staff
could. If the project staff
negotiated with providers or merchants they were viewed as “The State” with
bottomless pockets.
PEP sent each participant a monthly expenditure statement much like a bank statement. (See appendix) It showed how much money the participant had spent on their plan during the month. This allowed the participant to take ownership for the budget and expenditures. Participants paid careful attention to these and immediately called if a mistake had been made on the statement.
All services that the participant received had to be authorized by the participant prior to the project paying the bill. PEP did not pay for any item that the participant did not authorize. These elements gave participants basic control of their resources within the project.
PEP designed the framework and parameters for the budgets. PEP trained participants on the rules for using the state field orders. (Field orders are the voucher the Division uses to pay for goods and services.) Participants had extensive flexibility when contracting for services. Participants could determine the cost, scope and duration of the service. They were able to contract with whom ever they chose with two conditions. First the participant could not be related to the contractor. Second a reasonable person would assume that the contractor had the expertise to provide what was being contracted for.
Once the project understood the relationship between control of money and true informed choice, it attempted to provide more options for participants to control their money. The project wanted to test participants using cash or debit cards to pay for services. PEP was never able to get a waiver from the state to use different procurement methods other than the field orders. Although these ideas did not come to fruition during the life of the project, the Division is considering testing the debit card idea in the vocational program within the year.
Services are intended to help participants achieve their goals. Service providers both from within the system and outside the system need to answer to the participant, not to the vocational counselor.
The Division structured PEP so that participants chose who was on their rehab team. Participants (and if they wanted, a team member or other PEP staff member) interviewed, negotiated with and chose the service provider they would use. Participants contracted directly with the providers for the services they wanted. Participants authorized payment for all services they received and all reports went to the participant with a copy to their counselor.
Six years ago the above practices were too much of a big departure from how business was done in Washington State. The established practice was for the counselor and the participant to choose a provider based on the counselor’s recommendation. Many counselors and providers were in a symbiotic relationship. Service providers knew if they provided the services vocational counselors wanted they were guaranteed a constant stream of referrals. A service provider could market their services to a unit of vocational counselors and be relatively assured of referrals. Answering one participant at a time and contracting individually did not guarantee numerous referrals. Many providers just did not feel this approach made good financial and business sense for them.
Providers also struggled with the same attitudinal change that counselors wrestled with: accepting the participant as trustworthy, powerful, and in control. Many did not believe that participants did have the knowledge and expertise to make good decisions. This was a particularly difficult attitudinal change if the participant was also struggling with taking control. There is a dichotomy in rehabilitation in that we want employers to believe in participants and hire them but we, in the profession, want participants to prove themselves before we trust them to make good choices.
In the beginning of the project, only two out of the seventy certified providers were willing to do business with project participants in the way the project was structured. PEP held focus groups with providers to determine their resistance and to develop possible strategies. The project restructured how it did business based on feedback from participants and providers. Participants felt it was a waste of time interviewing providers because they did not listen to them, or answer their questions. Providers felt they lost too much money having participants interview them and felt the participants did not ask good questions.
The provider community had a legitimate point in that many participants had never interviewed a contractor before and did not know the questions to ask. Some participants were overly willing to share too much information about themselves. Few had the skills to maintain control of the interview. Providers naturally slipped into the mode of taking control of the interview.
To remedy this, PEP provided classes to participants on how to interview providers and evaluate if the provider could meet their needs. Participants, with the assistance of PEP counselors, designed potential questions to ask providers. PEP arranged for provider panels where a group of providers could explain their services and then be interviewed by participants. Having a group of participants interview providers helped make it more cost effective for the providers. PEP also agreed that we would pay providers for their interviewing time if participants chose to do so. Few participants chose this option.
Due to the limited amount of providers that were willing to contract with participants and the number of participants who wanted a job yesterday, PEP hired an in-house job developer on contract. Participants then had the choice of hiring an outside provider, using the in-house job developer or both. The effectiveness of the in-house job developer had an unexpected reaction with the provider community. They were more willing to contract with participants when they learned that the in-house job developer was effective.
The project director also worked with the provider community to increase their willingness to contract directly with participants. As providers realized this way of doing business was likely the model that would be used by vocational rehabilitation in the future, more and more providers became willing to contract with participants.
The
provider community never fully accepted the idea that they should send their
reports or bills to the participants. Even
at the end of the project PEP needed to return reports to providers requesting
they send them to the participant.
The
Choice Demonstration regulation required that there be a distinct separation of
funds between the project and the Division; that a participant could not be a
client of the Division and PEP at the same time; and that funds needed to be
separate. Washington State took this requirement further.
It set PEP totally separate with the rationale that it would allow the
project the flexibility to try new approaches.
The project would not be trapped with the Division’s policies and
procedures. It would be able to try
a host of different approaches and techniques.
It
would have been difficult to implement some of the approaches if PEP was to be
considered just another office of the Division.
PEP had freedom from the majority of the State’s policies and
procedures. It allowed the project
to experiment with an array of approaches without having to obtain a waiver or
exception to policy from the Division.
Most
of the approaches were simple in nature and allowed the participant more
flexibility in their plan and control of their services.
Participants were able to hire two different job developers at the same
time, or hire a professional in a given trade to teach or mentor them in that
trade, or hire an outside advisor, or negotiate with a provider for the cost of
a service or product. There
were several participants that prorated their contracts with providers, i.e.,
the quicker the provider found the job the more they were paid.
Some
approaches expedited the services a participant received.
PEP counselors had the ability to determine a participant eligible during
the intake, based on their professional judgment.
This enabled participants to enter the program and start the process
sooner than the traditional program, giving participants the impression the
service was user friendly.
Perhaps
the greatest impact of being removed from the Division’s policies and
procedures was the project’s ability to offer self-employment as a viable
option. Washington State DVR had an
elaborate policy for self-employment with extensive procedures.
These policies and procedures discourage most participants from
self-employment. Fourteen
percent of PEP’s participants were closed rehabilitated as self-employed.
During the life of the project, the Division’s self-employment closure
rate was around one to two percent. The
success of PEP’s self-employment approach resulted in the Division
reconsidering their policies and eventually changing them.
There
are numerous reasons for an individual to choose or not to choose
self-employment. The flexibility
that PEP allowed for self-employment gave participants the opportunity to
explore self-employment as a reasonable option that might sense for them. Roughly a third of the participants who explored
self-employment actually choose it. Participants
and their teams were often able to realize when it was not a good match and let
go of the idea after exploring the pros and cons of self employment, and moved
on to a goal that was a good match.
To
ensure separation from the Division the project was located in a completely
different location than any of the Division offices.
PEP was located in a thirty-five story high downtown office building. Participants commented on their exit interviews and
evaluations that they enjoyed the location of the office.
They felt that the program was serious about having people go to work
because it was located in the business community. Several participants obtained employment within the building.
The
downside to having the project separate was that it was viewed as different and
special. The separation has made
integration of many of the approaches more difficult and time consuming. Many staff feel that PEP may have worked well as a small
project but does not work well in a larger system.
Many counselors and Regional Administrators did not believe that PEP’s
experience was relevant to the traditional program because the project did not
have to deal with the restrictions they face daily. It would have been easier to integrate the approaches if PEP
had not been separate. The
cynicism could have been dealt with in the beginning of the project rather than
having to address it at the end. It
took and is still taking extensive effort to show how the approaches can work in
the traditional system.
However,
with the support of the Division’s leadership and the changes in regulations
PEP’s approaches and practices are being integrated into DVR.
Examples of approaches the Division is integrating are: participants
interviewing providers, providing training seminars to participants, the use of
the rehabilitation team and exploring how to increase participants controlling
their case service dollars. Two
years ago the traditional program refused to talk about participants controlling
their rehabilitation. Three
months ago the Director stated in an all statewide meeting “DVR’s existing
organizational infrastructure – policies, procedures, approval hierarchies,
management style, etc. – make it impossible for participants to control their
rehabilitation to the extent required by the Rehabilitation Act.
Nor does it fully empower our staff to exercise their professional
talents and abilities in supporting participant control of their rehabilitation.
DVR staff must be willing to play different roles with participants,
depending on what the participant wants and needs”.
The Director believes “that persons with disabilities must exercise
self-determination in all facets of their lives.
This includes control of their own rehabilitation”.