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1998 ILRU Focus Groups
Conducted to Determine Training & Technical
Assistance
Needs of CIL Directors, CIL Staff, and SILC Leaders
May 14 and 16, 1998
ILRU and the IL NET conducted three focus groups in conjunction
with the 1998 NCIL Annual Conference. The IL NET is the national
training and technical assistance project supporting centers for
independent living and state independent living councils.
These three group sessions were the first focus groups conducted
by ILRU for the IL NET. Focus groups are one of the several
approaches to needs identification used by the IL NET. The
groups were conducted in conjunction with the 1998 National Council
on Independent Living Conference held at the Renaissance Hotel in
Washington, D. C. Participants were assured that anonymity
would be maintained.
Group participants were asked to identify top priorities, pressing
needs, and emerging issues for their centers and SILCs. The
thoughts and ideas of participants will help guide IL NET staff
in planning programs and activities which best support CILs and
SILCS.
CIL Directors Focus Group
CIL directors participated in the first focus group. The
group met at approximately 5:45 p.m. on May 14, 1998. The
group met for about an hour. Approximately ten directors attended.
The following is a summary of comments from the CIL directors focus
group. For this report, comments have been organized into
these topic areas: Under-Served Populations; Children and
Youth; Staffing; Funding; Growth; Board; Mission vs. Market Driven
Approach to Operation; Services; Employment; Personal Assistance
Services; Rural Services; Relationships with SILCs.
Under-Served Populations
Several directors expressed concern and frustration about difficulties
in serving minority populations. One director said, "They're
different cultures, you know? So it's very difficult to get into
that culture so that they respect you and trust you and will work
with you.” The director added later, "I don't know how to reach
them. You can call them and say we want to serve this population,
but you know, if they don't know you and they don't trust you, then
they're not going to come to you for assistance. And I don't know
how to break down that barrier."
Others spoke of the variety of communities which needed support
from CILs: "We have a very large Choctaw nation . . . and
they are growing, the Vietnamese population on the gulf coast is
very large and growing. So we're not serving those populations like
we should be," one director said. From another: "That still
leaves so many cultures in our city that are not served. We
have no access to the Asian communities now and we have large
Chinese, Vietnamese, Japanese, Korean [populations]--separate
and distinct cultures to deal with."
Highlighting the relationship of funding and staffing to serving
minority populations, yet another director said, "I think as we're
all trying to reach out more and more to the culturally diverse
communities as well as different disabilities, the centers' budgets
are too small. They don't have enough staff to do that. For years
we tried to reach out to hire the Hispanic community by having a
person who spoke Spanish. When that person left, we didn't have
anybody else left to speak Spanish. We now realize that if you want
to impact those communities, you have to have somebody who is reaching
out to that community. You need more than one or they leave the
center because they feel isolated."
Although much of the discussion concentrated on minority populations,
one director commented on efforts to reach other disability communities:
"The other thing is that we have virtually no participation from
the deaf community. And that's something that we're looking at.
What people have told me is that we need people on our staff who
are deaf or hearing impaired in order to open up that community
to us."
Children and Youth
Several directors said services to children and youth were high
priorities. Transition from school to community activities
were important for several centers. Several participants said
children and youth in their service areas had independent living
needs which were not being met. One director said, "An emerging
issue for us is there's an increased demand for youth services thanks
to marketing transitions. So the expectation level has risen
very high from educators in the public school systems, and other
organizations and the parents. So we're inundated with this
increased demand for services thanks to the word getting out
on transitions programming." From another director,
there was this statement: "I feel we need to be much more
in touch with school programs. We're really struggling with getting
people into the rehab systems so they can begin to go through that.
They're not brand-new problems."
Staffing
Low salaries, staff morale, and personnel management were all areas
of interest for participants. A director stated: "Another
emerging issue is the competition for employment and finding
persons to fill employment within the independent living center.
What we can afford to pay ILC staff is just so much lower than what
the local mall can afford to pay persons." About morale, another
said, "I think there's a real high need to keep our team's spirits
up because they don't make a lot of money and they really have some
interesting, frustrating, challenging job responsibilities--and
how in the world to reward them in other ways besides money."
And from yet another director: "I think because we don't pay
great salaries, whenever you get someone trained, they get stolen
to another agency. Which is great--they're infusing the independent
living [philosophy] and infiltrating the enemy. On the other hand,
you're constantly [having] to start all over with a new staff and
train them; and that training curve keeps you from moving ahead
as fast as you want to."
Funding
In response to the question, "What keeps you awake at night?" one
director responded with a single word, "Money." Fund raising
is a priority and a headache for directors. "Your boards go
up and down in their ability to help support fund-raising," noted
one director, "and we're currently at a down position. So I don't
have a lot of support in my board with having more funding. We don't
have any fund raisers right now . The funding for a lot of us is
a major issue. A lot of other problems could be solved." Another
director added, "We're going to make it a real goal of ours to get
unrestricted money. Other non-profits do it."
Growth
Center directors describe challenges with expanding their service
areas. "[Our State] currently has three centers and 5 satellite
locations," said one director, adding, "Our long-term goal is to
get enough federal money to turn those satellites into centers so
we are covering our area better and not having to travel as much
and being able to hire local people." Centers are stretched
too thin, directors say. "I'm looking at how I can maximize
my manpower," said a director from a largely rural State. "We've
got a population of four and a half million just in the metro area
and we get phone calls from people that are not served in other
parts of the state. When we get a call from [another
part of the State], it's not like we can run down there. You're
talking about a four-hour drive. I've got a staff of four right
now, and there are just not enough hours in the day to handle the
number of calls we're getting."
One director described a goal of acquiring property so that a building
could be constructed for their CIL.
Board
One director described the need to improve her board's understanding
of CIL operations, saying, "We're working at really, really building
the relationship between our board and staff, letting our board
know what we really do on a day-to-day basis. They know the
global stuff and the core services, but we really want to
get them involved." Another described difficulties with board
expertise in fund-raising, "I don't have a lot of support in my
board with having more funding. We don't have any fund raisers right
now. If we can't get more funding, there's only so much you can
do in fund-raising and you don't want to start a whole program just
on one little effort."
Mission vs. Market Driven Approach to Operation
One director, who had attended the Total Quality Management training
conducted by the IL NET earlier in the week, commented on the challenge
of "striking a balance between being mission driven and being market
driven," a balance between operating purely on convictions and philosophical
perspectives and operating on needs in the marketplace. This
could, for example, cause a market-driven center to eschew the principle
of not duplicating services in favor of offering a profitable service.
The same director identified the conflict for her in terms of staff
selection: "[Balancing mission and market approaches means]
striking that balance between understanding that an independent
living center has a responsibility to provide a laboratory
of employment opportunities for persons with disabilities who may
never have worked before, knowing that the first opportunity at
real work is in your center, versus having to get work done--and
being tugged in both those directions--and understanding that it's
not just about getting work done, but that we have a responsibility,
a mission to provide fertile ground to allow a person to learn and
to nurture a potential employee, but trying to keep that in balance."
Services
Directors commented on a variety of service needs and opportunities,
including the following:
Interpreter Services--"The other thing we're having a lot of challenges
with is finding enough qualified interpreters to dispatch into the
community."
Advocacy--"The second thing is to get steady funding for our advocacy
work. All of our staff does advocacy and we do have one person right
now that we can assign to systems advocacy, to pursue {advocacy}
consistently. But that funding source is not stable."
Housing--"I need an answer to 'no housing.'"
Avoiding Service Duplication--"The big thing that I'm having
to look at now is what services can we deliver without first duplicating
services, because there are so many services available in an area
like [name of large city]."
Employment
Employment as a service and as a need was identified by several
directors. Identifying one of his major priorities, one director
said, "I'm thinking ours is figuring out how all the components
in the area of employment fit together. We've always done employment
in the center to some degree or another. But I think integrating
assistive technology with wellness, which is a whole new dimension
we've tackled this year--the stamina aspect, et cetera--along with
looking beyond a job into careers, career exploration. So how do
you integrate all of those things? Do you emphasize entrepreneurial
things?"
The same director commented that many persons receiving employment
services were seeing part-time work as preferable to full-time:
"As they come to us, what we've found is that they found out, ‘It
really wasn't full time I was looking for,’ Or ‘There was a lot
more that I didn't count on in regards to this job in the area of
simply being able to cope with an eight-hour day.’ All of these
things are beginning to surface and many people are beginning to
take temporary employment as an option."
Another director commented on the increase in employment services
in CILs: "I think employment has become a big issue
for us with all of the dis-incentives in our state.
It's interesting to us because the independent living movement originally
started to supplement the employment community, and as I talk
to more and more people almost all centers now have stronger and
stronger employment centers. It's an adjustment for us to say employment
is one of our biggest [services]."
Personal Assistance Services
One director noted that a priority for her center was a personal
assistance service program run by the center.
Rural Services
Several directors described their challenges assisting persons
in rural areas. "An emerging issue for us is how to serve
those outlying areas with the formula funding that came with the
re-authorization in '92. Our state won't be getting any new money
for like five to 10 years. So we're trying to figure out how to
do the satellites or branch offices or locations for service in
those more rural areas which we feel strongly must be served."
Management
One director commented on preparations for a site review by RSA.
Another expressed frustration with reporting: "Just counting people
doesn't give you the units of service that you're having to put
out--and so then since you can't count that person multiple
times without inflating and multiplying your numbers, how do you
really show what you do? There's so much work that you just can't
account for." Another asked, "How do you evaluate or show
outcomes for community advocacy and things that take you a long
time to work on--that may be four years to get something done--things
that you're part of the team, that you brought a coalition together.
How do you measure that? And {when} you network with other
community agencies and get things done in the community. How do
you measure that?"
The same director expanded on thoughts about community advocacy,
"I think for more and more of us, that's more and more of what we're
doing. And less of the direct services because we see changing
the forest and cleaning up the forest is better than one tree at
a time. As we're moving there it's harder and harder to be accountable,
harder to show things that you can sell to foundations and governments.
They like counting people a lot better. So if you want to be accountable,
how many hours you spend in a community meeting doesn't make
it. You want to show what the results are."
Relationships with SILCs
One director commented on center and SILC relationships:
"Centers in [name of State] have been dealing with the issue of
a hostile SILC that has been undercutting us rather than promoting
us. It has felt very much to us like the way they view their
monitoring function is to find dirt on us so that they can
put us down. And this to me is important, but really, really
sad because I think that SILCs and centers could be a really
united, strong, powerful factor."
SILC Focus Group
SILC members and directors were asked to participate in the first
focus group. The group met at approximately 6:45 p.m. on May
14, 1998. The group met for about an hour. Approximately
12 SILC representatives attended.
The following is a summary of comments from the SILC representatives
focus group. For this report, comments have been organized
into these topic areas: Leadership and Growth Issues; Relationships
with Designated State Units and Federal Entities; Funding; Management
Support for CILs; Technology Support for Centers and SILCs; Advocacy,
Lobbying, and Other SILC Activities; Underserved Populations; Youth
Leadership; Rural Services; Health Care; Employment; SILC Staffing.
Leadership and Growth Issues
Several participants commented on concerns about the appointment
process which resulted in SILC members who were not knowledgeable
about independent living or not committed to independent living
objectives. One participant described problems with selection
and appointment of SILC members. "Getting someone on our council
is like a chess game," she said. "We are looking for
persons . . . who truly hold and support the vision--or even understand
it--and understand the philosophy." She noted that this problem
highlighted the need for education of leaders and of the larger
community. Another participant said, "If there is a training
that teaches people how to spot and select the right individual,
I would like to attend that training."
Another participant said the DSU in his large State acted as the
gatekeeper for SILC membership. He said, "Even though they're
open to recommendations, . . . they're bringing in people who have
no ownership, and as a result, very few people control the activity
of the SILC.” He also said that the SILC could not operate in some
cases because too few members participated to gain a quorum: "We
don't have enough people to move." Another expressed similar
concerns about the appointment process: "The final selection
is not in the hands of the council. . . . they can give you a full
council, but that doesn't mean that you are going to have a council
that gives a damn." Yet another person said, "We come up through
the council with the names of people that we feel will do a good
job, but somehow our governor has gotten it into his head that there
should be only nine people on the council." In response, another
participant said, "I'm not sure if you gave the governor names of
people who did give a damn, if that wouldn't make the governor nervous."
Another participant echoed concerns about maintaining an active,
committed SILC membership. She said her SILC had "just a small
core" of individuals who have worked over the years to accomplish
SILC objectives. Of having only a few leaders, the participant
said, "That's a significant threat to the SILC in my state--it's
just that lack of activity and lack of people who believe."
Two participants said their SILCs were planning to incorporate
as 501(c)(3) organizations. Several others reported varying
degrees of growth and success in their SILCs. Of growth, a
participant said: "We're even going 501(c)(3) in June.
When I first came in six years ago, it was a mess. There was
a lot of fighting . . . . We had to really work to solve all
of those problems and get rid of the bad apples. Now, we've
got a good working board [SILC]. But I'm telling you, it has
been hard."
Some participants said they considered organizational development
and movement-building as separate from the tasks of the SILC.
Said one, "External to our work is developing the . . . independent
living infrastructure . . . ." Another SILC representative
commented on the problem of having to focus too much on internal
development issues: "there is a risk of worrying too much
about our internal [issues]--keeping our centers going--and not
paying attention to those external threats."
Relationships with Designated State Units and Federal Entities
Several participants described relationships with designated state
units as a troubling, pressing issue. One said, "We have two
designated state units in our state, and since the SILC has been
in existence, one state unit fully supports and another state unit
chooses to do otherwise. It's been a constant issue and debate
. . . ."
Another participant questioned the validity of the SILC structure
as conceived in the Rehabilitation Act which "supposedly created
it as an entity free of the designated state units . . . ."
He added, “It's a facade. It's not real. It's not true.
We've talked to the feds and talked to them--conference calling,
meetings and letters, et cetera--and they simply say, ‘whatever
your state wants to do.'"
The same person continued comments on SILC and DSU relationships:
"We developed our last state plan with the understanding that .
. . the plan--the budgets, et cetera--was to govern how to provide
independent living services in our state. We found out, surprisingly,
that one of our state units had received a lot more money in that
category than what we knew about . . . . We found out that
even though our state plan said we're only supposed to use this
amount, it didn't matter what our state plan said."
A SILC director described the unintended consequences of the DSU
opting out of the independent living program at a time when only
a few centers were in operation and ready to receive funding:
"[The State said,] ‘We don't have to hang out with crippled people
anymore,’ so they basically gave us all the money . . . ."
Later she added: "We have more money than we have capacity
right now. We have a lot of money to give people and we don't
have people to give it to."
One participant noted problems with communication between RSA and
SILCS, particularly with respect to providing materials in a timely
manner: “In [our] State, we finished our state plan. We have
the board of regents that has to approve it. Which is a pain
because the feds always change those attachments which means we
have to have a last minute meeting. Please quote me on that, too.
Another participant said, "If ILRU wanted to put together a peaceful
round table where people could discuss those issues with one another,
that would be great."
Funding
Funding was a significant issue for SILCs: "who's got it
and who controls it," as one participant described it. "That's
about the only power that you'll have in the state--whether you
can keep the centers alive with that is really shaky right now."
Another participant described a priority for their SILC as being
increased funding to bring all centers up to a base level of funding,
noting that several centers started in the past few years had begun
with low funding levels. "We have five centers in the state,"
she said, "and only two are funded at the so-called optimum level."
She continued: "We also have a SILC office. How do we
fund these centers and the SILC office? How do we tap state
monies or other kinds of monies in order to enhance what we have--even
to think in terms of increasing the number of centers?" Another
participant said, "We only have one center that's funded adequately."
The SILC director who had commented earlier about a funding surplus
noted that her State is anticipating a time when there will be funding
limitations, "because even though we're flush now, by the time that
we get all these projects developed, we're going to need money and
we're not going to have it." She added: "If there is
a {SILC} staff position, it will be a development position."
Management Support for CILs
Participants noted the need for SILCs to support centers in their
states. One outgoing SILC chair said, "One [SILC priority]
is the assistance and the training needed by centers to improve
their fiscal management capabilities." He commented on the
need for board development help for centers: "[Centers need]
a board of directors that has an idea of what independent living
is and ownership to the cause--and people who give a damn so they
can show up to a meeting."
A SILC representative from a U. S. Territory said a top priority
was the creation of new centers, noting the Territory had only one
center. He added, "In our next plan for three years, we have
developed a plan to help community based organizations to . . .
develop boards." He noted that the one independent living
center had experienced high staff turnover and that the SILC needed
to help the center with this problem.
Another participant spoke of the need to expand training for centers
in the state. The SILC he represented plans to "develop various
training capabilities . . . to assist in financial management--especially
for new center directors, in board training," and in other areas
as yet unidentified.
Technology Support for Centers and SILCs
Several representatives noted technology as an important priority
for SILCs and CILs. One person described a vision of centers
and SILCs being connected electronically so that at the "flicking
of a switch" centers across one state or many states would be connected
for training or conferences. The representative said, "In
our state plan we've set aside part B money to create electronic
infrastructure in all the centers . . . ." He added that video
conferencing was planned within the next three years.
Advocacy, Lobbying, and Other SILC Activities
One former SILC chair said the SILC in his State was working to
develop "the various linkages to facilitate increased funding through
other avenues via the departments of mental health, substance abuse,
social services, and others. Another SILC is a plaintiff in
a managed care lawsuit filed against a large insurer. "They're
a very big and very wealthy insurance company," the director said,
"so you have to be real clean in everything that you do."
The same director said the SILC in her State was working to use
the contracts it is managing to expand services in the State."We're
going to have [a contract for] a managed care watch dog, and we're
going to have personal assistance projects," she said.
One representative said she was working with her legislature, but
added, "I'm not sure if the work that I do with the general assembly
is work I'm supposed to be doing. So that makes me nervous."
Several participants spoke of their SILCs's priorities of increasing
education. Two representatives noted involvement in advocacy,
lobbying, and development of legislation related to independent
living.
Of training needs in this area, a participant said, "We could use
some nuts and bolts [training] on how to play the politics. . .
. You give this speech and he [the legislator] looks at you
and says, 'Would you like a tour now?'"
Underserved Populations
As was true with CIL directors, outreach to minority populations
was a high priority for SILC representatives. One representative
commented on challenges of balancing needs of various groups throughout
his State. Another described how the SILC addressed the issue:
"We started five pilot projects to . . . do some outreach for the
underserved and unserved." Another said the SILC was going
to make "mini-grants" available to centers for outreach.
Youth Leadership
Youth leadership was mentioned by several participants. One
participant commented: "We understand that we are not going
to be around for too long and we need to guide the young people
so they can take over sometime in the future." Another participant
added, "We've got to pay attention to our youth . . . in educating
them, and instilling the vision in them, and helping them to catch
hold of the dream and the vision of independence and living in a
society where they can be what they want to be . . . ."
Rural Services
Serving people in rural areas was another priority: "[Our
State] is a very rural state. Even though you may have a center
for independent living in eastern [State], it doesn't take care
of the needs in that entire region. So we desperately need
to expand our network."
Health Care
One participant described health care as a pressing issue for the
SILC: "So the things that I feel like are threats, external
threats, have to do with the health care system--managed care system
and Dr. Kevorkian and so forth. A 26 year old quadriplegic
was Kevorkian's latest victim. The managed care and 'you’re
cheaper if you're dead' [concept] is a tremendous threat to people
with disabilities."
Employment
One participant commented on employment as an emerging issue for
SILCs: "The second external threat that I think is pretty
significant to us--[with] both an upside and a down side--is the
employment movement. If we successfully deal with some of
the work dis-incentives, I am worried that we're going to see that
you have to go to work--the way we've seen it with welfare reform.
And in our state, and in many places--I know southern states are
particularly known to have problems here--we have moms that have
been bounced off welfare but their kids have significant disabilities
and there's no child care, medical supports, . . . . We're running
rampantly in this everybody-has-to-go-to-work mentality and destroying
families. That's another significant external threat to people
with disabilities."
SILC Staffing
"I think one of the major issues for our state, and perhaps for
other states, is how to hire and work with a SILC staff," said one
participant. Another said the SILC in his Territory was staffed
with a part-time executive and part-time secretary. He wondered
about staffing in other SILCs.
CIL Staff Focus Group
CIL staff participated in the third focus group. The group
met at approximately 12:00 Noon on May 16, 1998. The group
met for about an hour. Approximately 8 staff members attended.
The following is a summary of comments from the CIL staff focus
group. For this report, comments have been organized into
these topic areas: Leadership and Staffing; Outreach; Rural
Services; Services.
Leadership and Staffing
Advancing the independent living philosophy was a priority for
centers. One participant said, "For us one of our issues is
getting people to buy into the whole idea of the independent living
movement." Many persons with disabilities in the center's
service area have been used to paternalistic "pat-you-on-the-head"
approaches of service providers, so the CIL's priority is, "to get
that [IL philosophy] integrated into service settings"
Balancing systems advocacy and direct services was a concern of
several CIL staffers. One said, "we feel like there are so
many consumers whose needs are not being met, and coordinators that
are working on direct services are so stretched, yet we definitely
believe in the systems advocacy . . . ." She added that some
staffers felt there should be more direct services while others
felt that more money should be spent on systems advocacy.
Another staffer said: "[We see] so many people that need so many
services that--as usual--the front line people are stretched to
provide each person with the services that they've requested; and
what we've been trying to focus on is making sure that every time
we see a new consumer--or see a consumer that we don't see very
often--that we take the time to step back and talk to the person
about the big picture and then narrow down to the specific services,
rather than just provide the service they asked for."
One staffer described his center's efforts to deal with this issue:
"We have this program to transition sixty people who are under the
age of 60, living in nursing homes, into the community, and trying
to do so in a way that not only is successful for that individual,
but [which] sets precedents, and helps us demonstrate that policy
changes need to be made, so that it becomes a natural progression
that takes place in a more fluid manner . . . ." Another participant
said at the center where she worked, the board and staff were, "trying
to figure out how to establish some type of system to meet all the
needs that should be met within our community." She continued,
"Our organization has taken on a work design process, and for us
the real challenge, within the next year, is to recruit consumers,
board members, staff members to staff the three work teams that
we've developed to address individual services, advocacy, and resource
development." She stressed that the board and staff saw the
importance of resource development: "We know if we don't do
the resource development, they're not going to be able to support
the other two core teams."
Several CIL staff members said keeping in touch with the disability
community was a high priority for their centers and for them personally.
One CIL staffer said, "[ensuring the center is] addressing the communities
needs, so the independent living center reflects that community--that's
a real key issue right now."
One participant spoke of conflicts between center priorities and
individual staff member priorities. She expressed frustration
at, "trying to maintain the work plan priority that's been spelled
out by the director and at the same time, you know, keeping my heart
issues, as a disability activist." She expressed frustration
at encountering people whose needs could not be met by the CIL,
saying "[we have to say to a consumer] our independent living center
only does these certain things and we'll have to refer you, instead
of addressing each consumer's needs." Later, the same participant
expressed frustration at being part of a bureaucracy instead of
an agent for change: "I'm making money off of listing all
the people that I provide information and referral for, that I advocated
for, and peer counseled, and put down my little narration, and made
their little file and stuck a sticker on it and put it in the drawer
so it can be evaluated."
Another participant spoke of losing sight of the center's mission:
"Everyone is working so hard to serve the population that they're
responsible for that sometimes we lack an understanding of what
our mission is as a center--what our direction is . . . ."
Staffers spoke of having far too much to do in their jobs, of being
over-worked. One participant said she often asked, "How am
I going to get this report done when I've got three others and I
have two appointments." Another asked, "Where do you draw
the line and how do you sort out the priority." From another
participant: "All of the staff are feeling very stretched.
I think this is probably a general theme." She described the
situation at her center: "We need to reach out to more consumers--we
serve a very rural area--and there's just been a real frustration
in the office with not being able to further extend our services,
and not being able to meet the demand we have right now, and everyone's
feeling so frustrated and so overworked." She noted the center
was adding a new part-time staff position to help with the overload:
"This one position-- which was so long overdue--I think will help
a little bit, but I think the same frustration will still be there."
From another participant was the following: "I think anywhere
in any center [we're] going to find that there are just too many
people, too many consumers and too much challenging work to be done
for the amount of people that are available to do that [work]. And
I think this's always going to be the case.” She continued, "Hopefully,
you know, year after year we keep selling the concept that the IL
approach is the right approach, and that increased resources and
attention to doing things the way we do things is the right way
and a cost effective way . . . ."
A staffer described what her center was doing about this issue:
"All the IL people get together in staff meetings and talk about
what are the core competencies that each of us really needs to have
to perform our jobs . [This] gives you something to work on to develop
your skills so that people can support each other, and have common
resources and common abilities to trade off and support each other."
Another center is looking to computerization to help, but the training
time and effort will be extensive. "We just have to get all
of the staff past the initial [steps of learning the] computer,"
she said. "We've got people that are really, really well educated
and know the whole system. We've got people that [say] 'How
do I turn this on?’" She added later, "We at least realized
that we're going to have to set aside some dollars for some really
good training."
Staff communication and cohesiveness was also noted by participants.
Said one, "We're missing a real cohesive staff. Because of
the rural community, we're out of the office a lot; we don't see
each other in the office a lot." Others spoke of the difficulty
of arranging staff meetings. Another participant made favorable
comments about the CIL's decision to hold a staff retreat:
"A few years ago we did a staff retreat, which was only a day retreat.
We did it out of the office so we wouldn't be interrupted. It was
wonderful. That was really helpful. You really need
the opportunity--if there's misunderstanding between staff, if the
information and referral person hasn't felt like there was adequate
follow up when she passed this information along about this person
becoming a consumer, and for whatever reason."
Participants saw that boards and managers also felt the pressure.
Said one participant, "Since we're a new center, we have a lot of
demands internally on our board--from our staff--and externally
from the community, from the people that we serve. So one of the
other focuses we've had as a center is trying to, and I think especially
as board members, trying to gather funding, trying to raise funding,
trying to influence people that actually have money that they could
contribute to independent living, to become involved with the movement."
Outreach
Several participants said outreach was a priority for CILs.
One participant from a new center said, "I think there are some
more basic things that our consumers need. They don't know
we exist, and we're still at the stage that we're trying to do enough
outreach and awareness to bring people in."
Of center priorities, another participant said, "Ours is outreach,
so that people are aware of our services and know that we're available
for them." Yet another participant said a priority for the
center with which she worked was "to have the community involved
all the time. We're still trying to get the community to buy
in--recruiting people to do the work that needs to be done, advocacy
and peer counseling." From another participant: "We're
looking for who's going to come along, younger people, so we're
having to do a lot of outreach. We're starting with a lot
more colleges in our area . . . . People [to] carry the torch
is a big issue."
Rural Services
Representatives of rural CILs spoke of the unique pressing issues
faced by these centers: "We're seeing that we're not able
to get out there. It's more difficult to get out there one-on-one
and meet the needs of every consumer with a disability, trying to
have more focus groups, programs that we can bring consumers in
to the center . . . ." The problem is exacerbated by the lack
of transportation: "We don't have the money for transportation
to get them in to the center."
Services
Transportation was noted as an important service need by several
participants. Said one, "In the rural area, transportation
really is a big problem, because there's no transit system at all.
The disabled people can't get from point A to point B.” One
center has sued a transit provider over access and service issues.
Another participant noted, "We had huge issues around transportation,
we were able to bring the ride service to the main part of our service
area. We were fortunate enough to do some really good advocacy
that brought it there." She continued, "Now there are a lot
more problems as more and more people use this ride service: people
are getting bumped off, they can't get to their jobs. I'm
finding that's all over the country."
Another participant said, "It's even more basic for us. What
we need to address is the poverty issue, for our consumers to chip
away at that. Because without money you can't have housing, and
if you don't have money, you can't ride the bus, or, you know what
ever it is, you can't access those services."
An emerging issue noted by one participant is "turf issues with
the DD community, with the mental health community, with the sensory
disability arena. We feel it's our mission to provide independent
living services to all people with disabilities." As the center
begins to expand consumer-directed services to new populations,
service providers may, "see that as their turf."
Another participant described a successful personal assistance
service program operated by the center with which he was affiliated.
He noted that consumers in the State were "struggling to compete
with a booming industry in home health and assisted living for people
they want to hire as their personal attendants." The center
is calling for increased reimbursement rates for so that the consumer-directed
programs can pay competitive wages.
Technology was noted by participants as a priority area.
One said, "My main goal is to continue to facilitate a good working
relationship between VR and independent living, as well as trying
to get school districts to help on the funding of assistive devices,
and making sure that Medicaid is paying when they're responsible
for paying."
Another center is involved in computer recycling: "We have
a new initiative that we started last year. Given that knowledge
is power, our overall mission is to get that information into the
hands of the consumer. There are just such great opportunities
for people in so many areas if they're able to be connected with
the net [the Internet]." She described the program this way:
"You can get computers from everybody. We have people with
the expertise to fix them up if they're not running, and we're going
to get people to come in and help work on this themselves--like
the consumers--and we're going to give them the computer. It's not
going to belong to the State; it's going to belong to them.
We're looking for a little exchange or volunteer hours--there are
different things they can do--but we're not just handing them the
computer. They're going to feel like they've been a part of
this whole process. we're going to hook them up to Dimenet--it's
free. We're going to start news groups for people in our areas
and that's going to solve a lot of problems for people that aren't
able to get in to the center. We're going to be able to communicate
that way. It's going to be a gradual process, but we're hoping
that it's really going to take off once it gets going."
ILRU staff present for these focus groups were: Richard Petty,
Carri George, Pamela Dautel, and Dawn Heinsohn
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