My advice to anyone who wants to work by accessing rehabilitation
know your goal: be clear about your goal before you make initial contact and do not waver
even when your rehabilitation counselor wants to shift from a career to a job, from a high
aspiration to a "realistic" one
get help: have a support network and an advocate in place; do not be brave or heroic;
contact your local Client Assistance Program at the very first problem or slow-down
keep a record: document every single step, every phone call, every meeting, every unmet
deadline, every unreturned phone call, and follow-up continually to keep the process
know the facts: make sure that what you are told when they say you cannot have something
is actually true and in the regulations rather than your counselor's (mis-) understanding.
My advanced degree aspirations had been detoured by babies and depression
but I had already accumulated 30 formal units towards a masters degree. I learned about an
assessment university which would accept those earned units and my life experience and
guide me towards an advanced degree. I asked California's Department of Rehabilitation for
help. I have been admitted to a doctoral program, have completed the course requirements
and a dissertation, and expect a degree awarded by March 2000. This article details how
that all came to happen. My advice is know your goal, keep a record, get help, know the
Me and Voc Rehab
Sylvia Caras, (c) 1998
Independent rehabilitation professionals tell me that difficulty getting vocational
services is a common problem. (1) I've experienced that
problem first hand and have organized my encounter to share it so that others may at least
have a sense of what to expect.
The story began in 1966, when my family and I were told that I would continue to
deteriorate and never be able to live without assistance. I believed that authoritative
report from the nation's best psychiatrists at McLean Hospital but for 20 years I chose to
not comply, and instead did live alone, but on the social outskirts. In 1986 handcuffs and
unconsented treatment helped me decide to enter the mainstream as an advocate. In 1987 I
started a local self-help support group for people with melancholy and mood swings. In
1991 I was trained by the Disability Rights Education and Defense Fund and helped to
implement the Americans with Disabilities Act (ADA). In 1993 I found my niche -- the
Internet. I published and presented and by 1996 thought I was ready to earn wages, but
only part time, and in June I applied for services to California Department of
Rehabilitation. It took 25 months for my request for schooling to be granted, schooling I
needed to replace my disability income with high enough wages from only part time
employment, and it will be at best 40 months from the time I first applied before I will
have met my Individual Written Rehabilitation Plan goals and even start to look for
employment. That's over 1200 days I will have had to keep hope alive, believe in myself
and my goal, and continue to not have regular earned income.
I've had 5 different rehabilitation counselors so far, and one Client Assistance Program
(CAP) advocate, have been accompanied to rehabilitation appointments by our local former
Patient Rights Advocate and our local mental health employment specialist, and have posted
about my experiences to the Internet.
When I applied for services, my goal -- as with other things I've done -- was to achieve
for myself while documenting so as to pave a way for others. (2)
I was able to maintain my determination by using the newly established Internet resource,
the California InterNetwork of Mental Health Clients (CINMHC), to start a thread titled
"Me and Voc Rehab" which, sadly, I still have occasion to use as an e mail
There have been perhaps 75 e mail messages posted, many from me, many containing replies,
suggestions, support, encouragement. From those postings, I've summarized and edited what
I was thinking about when I approached Department of Rehabilitation and what I posted to
the Internet. I've maintained the flavor of the Internet and the tone of the exchanges
with rehabilitation workers. The quotes are literal.
I knew I could be productive if I self-scheduled and worked from home. I had found that my
functioning had improved hugely since I started not going out in the mornings or making
appointments before noon.
My aspirations for an advanced degree had been detoured by two babies and depression but I
had already accumulated 30 formal units towards a masters degree. In the spring of 95,
while presenting at a managed care conference about the Internet work I'd been doing, I
learned about an assessment university which would accept those earned units and my life
experience and guide me towards an advanced degree. The university had no in-person
requirements. I sent for the catalogs, spoke to a graduate and a staff person, was
encouraged by a May e mail message from Lori Shepherd (3),
framed my goal to become a self-employed mental health consumer consultant, and on June
28, 1996, I telephoned the California Department of Rehabilitation's office in Santa Cruz,
Me: I'd like to make an orientation appointment.
Rehab: Group orientations are at 8:30 AM on Wednesdays.
Me: Mornings are hard for me. May I have an afternoon appointment?
Rehab: It's normal to go to work in the morning. This is when we orient.
Me: May I speak to the ADA Officer?
Rehab: What's ADA?
After no call-backs to my two phone messages, I used a strategy that is easier for me; I
wrote a letter. On August 9 I requested an ADA accommodation. It was eventually granted,
and I was oriented during an afternoon appointment. I was focused and clear about my goal
and asked if it was realistic to expect the Department to help because if not, I would
stop right then.
By September 12, 1996, I had completed and submitted some data forms and was speaking on
the phone with my assigned counselor:
Rehab: I don't make afternoon appointments.
Me: I'm requesting an accommodation.
Rehab: Our meeting will be a long way off. Are you a county mental health client? Who
is your psychiatrist? Who manages your medication?
I posted to CINMHC, got advice and support, wrote a letter, and had an afternoon intake
On October 9, 1996, I had a two-hour appointment with my counselor. For much of it he sat
with his back to me inputting to forms on his computer screen, a process I was to see
several times again. If I bent and strained, I could also read the screen. The form had
lots of typos, and I wanted the Department to fix that. I even offered to help.
Me: ... consultant, ... self-scheduling, ... part-time
Rehab: ... full time job, and we need Greg Katz to do an evaluation.
< this reminds me of too many unpleasant experiences; I am calm outside and feeling
Me: Katz violated confidentiality when I was an inpatient. I want an alternative.
Rehab: We only pay for California schools.
Me: I haven't found any California distance learning programs.
Rehab: We'll only spend as much as California schools charge. I've been hearing about
you for a long time.
December 19, 1996
Rehab: ... forms are missing. Must be signed and received within 10 days or we drop your
Me: Which ones? I don't have any forms. It's the week before Christmas. Are you blaming
me for the Department of Rehabilitation not mailing the forms timely?
Rehab: OK, now, Sylvia. I might be able to get an extension. It depends on how quickly
you can get the paper work in.
The CINMHC subscribers suggested documenting every step, leaving no room for error, not
assuming Department of Rehabilitation will do their part. I decide to post to the list
about each encounter. The sample exchanges I've included above and below are edited
versions of those messages, which still maintain the exact wording.
February 22, 1996 I was assigned a new counselor:
Rehab: SSA didn't send your records. You have to see a psychologist. You have to see
Greg Katz. You need to hurry to get this done, I don't have the forms ready that you need
to do it, and I'd like you to sign this 60 day extension.
Me: Anyone but Katz and I'd feel safer if I had someone with me.
Rehab: OK. Are your expectations to be a part-time consultant realistic? How about
working full-time for the Client Assistance Program (CAP) in Fresno as a goal?
I managed the psychological evaluation by asking to be accompanied by Santa Cruz's former
Patient Rights Advocate. After it was over, she sat with me for two hours, over tea and
sweets at Gayle's Bakery, while I debriefed, told her about other evaluations by
psychologist, heard her feedback about the session, and generally rebalanced myself. By
mid-April I had received a Certificate of Eligibility based on my having been an SSDI
recipient for a number of years. The psychologist evaluation hadn't been necessary. The
defined "window for severity", within which my disability must fit, had widened,
the counselor guided me in answering the screening questions, and I scored properly to fit
within the boundary parameters, passing the "order of selection" test.
The next year felt like riding in heavy traffic, moving very slowly, but at least moving.
In May we started discussing services. Since I wanted to be self-employed, I had to
complete the small business kit, a budget, a business plan, and the details of the $5883 I
had earned in the last four years as a mental health consumer consultant, as well as a
proposal for services. I said, as I had to the intake worker a year before, that I wanted
"to become a self-employed public mental health consultant." In July I received
30 hours of required vocational assessment. I showed I could use a 10 key adder and
correctly post entries to a bookkeeping ledger and satisfied them that I had the skills to
In August a Labor Market Survey was ordered to see if a mental health consumer could be
employed as a consultant. In September my counselor quit. When I was reassigned to my
first counselor, in frustration I contacted CAP, whose 800 number was out of range. The
Department of Rehabilitation had moved their offices and decorated with new carpets and
paint and other materials that outgassed other chemical odors but had not installed fax or
voice mail. The counselor found no record of the Labor Market Survey in my files and
stated, "We aren't going to send you to school." I wrote to his supervisor ...
Department of Rehabilitation
1350 41st Ave
Capitola CA 95010
Dear Ms Sweeney:
Larry Peyton, during his phone call to me Wednesday, October 8, told me that graduate
school training was not a service he would provide me and rejected my career goal of being
a mental health consumer consultant.
My explicit goal -- from the Department of Rehabilitation (DR) orientation interview over
a year ago, the intake interview with him in October of 1996, the career plan I submitted
in May of this year -- was to become properly credentialed to be a principal investigator
so that I could earn as a consumer mental health consultant while accommodating my
I defined my goal with all three DR staff people with whom I have met. I brought details
to the early sessions about Summit University -- the school I have found which meets my
needs and accommodates -- the Summit application, and the name of the faculty member in
Oakland who will be my advisor.
During all my meetings with DR staff, I have felt I was -- as well as discussing my own
aspiration -- representing other people who experience mood swings, fear, voices and
visions. I have cooperated timely with every request, quickly provided every document
requested, submitted to all testing. Still, I have left many meetings feeling bad about
myself. I feel it is time to speak up.
In my exchanges with Larry Peyton, I have felt intimidated and disrespected. I would like
any further substantive discussions to be by mail. I also want a third party present for
any further face-to-face meetings. Larry Peyton has already referred to "you
people" when alluding to my Jewish ethnicity and to how "old" my college
degree is. I am troubled by his dismissiveness and attitudes. This is not a good match.
I would also like mailed to me the results of my interview with W Moore at Shoreline and
his subsequent Market Analysis.
146-5 Chrystal Ter
Santa Cruz CA 95060-3654
10 October 1997
cc: Lynn Toschi
ec: Lori Shepherd
ec: Rama Khalsa
The Labor Market survey is "reported out" to me, my counselor, and am advocate
I've asked to come to the meeting. The scope was local and did not survey the
opportunities for national consulting specified in my goal. A second survey is ordered. I
am assigned a new counselor. CAP keeps asking "We haven't heard from you; can we
close your case?" I keep replying, "Nothing's moving."
Posting number 165, dated 3 Feb 1998
Reply-To: California InterNetwork of M H Clients CINMHC@MAELSTROM.STJOHNS.EDU
Last week, I received a letter from my new rehab worker, saying it was
"important" that we meet and telling me the day and time that he had scheduled.
I went to the meeting, anticipating a status report and informal chat. I walked in to the
new VR quarters, which smelled of new carpet and paint, and within 60 seconds was welcomed
by the Director, Deborah Sweeney, and ushered back to a conference room where four people
-- two from Shoreline Occupational Services, my worker, and Larry Whatley -- were waiting
to have a meeting with the Director and me.
I felt unprepared, acted flustered, and, afterwards, realized this had been a set up
since I hadn't known I might want to bring an advocate. Lesson: call to find out why the
meeting has been required.
Since the meeting couldn't be moved outdoors (yes, rain here; lots), I said I would
stay 30 minutes, and in the future I hoped Larry and I could meet elsewhere and that lots
of people with psychiatric disabilities also have chemical sensitivities. (VR doesn't
recognize environmental illness as a disability.)
The second Shoreline Labor Market Survey was thorough and fully supportive. There is
indeed employment as a consumer/researcher. And an advanced degree is necessary to do this
work. But VR certainly doesn't want to support this. Deborah Sweeney noted they will only
rehabilitate to entry level requirements, through accredited institutions. I said I didn't
need accreditation since I didn't want to do clinical or post-doctoral work and that I had
looked carefully and not found any accredited school where I could accomplish my goal
within the constraints of accommodating myself and that I had made this clear at the first
appointment over 18 months ago. The next action will be Deborah investigating the
accreditation regulations. I said I would be willing to be a test case, use the ADA and
the cross-disability community to see if these requirements were meaningful or changeable
<one very big sigh>
To share with others, I asked for an electronic copy of the Labor Market Survey done on my
behalf and was refused because it was "confidential."
Several follow-ups with Sweeney did not produce the accreditation regulations. When CAP
sent them to me, I found out why. Correspondence schools don't have to be accredited; they
may be approved by the local District Administrator.
In May, I posted to CINMHC:
My rehab counselor is trying to actually write my IWRP (Individual Written Rehabilitation
Plan) this week. Why? Because he is transferring from Santa Cruz. I will soon get assigned
to my fifth counselor.
He did write the plan, we signed it on June 22, 1998, he arranged my transfer to the next
counselor and ensured I had a maintenance check to use for ordering transcripts and
submitting application forms. By July I'd been accepted at Summit. Next, fees. Rehab will
pay no more than California schools charge. They stated low San Jose State University
(SJSU) fees as comparable. But the SJSU program is not a doctoral program. I pointed to
University of California Santa Cruz instead, where fees were actually higher than where I
had been accepted, and Department of Rehabilitation agreed to pay the billed tuition at
the school where I'd been admitted. Then Rehab got bogged down with bookkeeping processes
and didn't pay. My Provost graciously started to work with me, and we both tried,
unsuccessfully, to untangle the process. I again turned to CAP:
I have applied to school, been accepted as of August 1, 1998, pending a payment contract,
and DR isn't sending payment.
California's federally mandated Mental Health Planning Council met nearby. Encouraged by
others on CINMHC, two of us testified on September 18. I said, "I have concerns of
retaliation, in particular not being funded to complete the Program" and was
comforted by assurances from a representative of DR who is a Council member.
DR arranged to make payments to Summit only after semesters are completed. Semester one
ended on Halloween, 1998.
I had planned to publish this story when I could proudly sign it Sylvia Caras, PhD, and
describe my new, exciting job. But I'm impatient. I have been admitted to a doctoral
program, have completed the course requirements and a dissertation memoir detailing what I
know about the history of mental health consumer advocacy on the Internet. I expect to be
finished and have my degree granted by March, 2000. Publishing this is my way of wrapping
up this theme for myself, though there still may be a coda about job-hunting in the year
1. Ruth Hughes (personal e mail communication, Sep 11 1998.)
2. Caras, S. Disabled: one more label, Disability & Society,
Vol 9, No 1, 1994, p 89. This essay tells the story of how I came to receive Social
Security Disability Income.
3. Supervisor, Peer/Self-Advocacy, Protection and Advocacy, Inc.