My advice to anyone who wants to work by accessing rehabilitation services:

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 moving

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 facts.

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 subject header.

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, CA.

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 appointment granted.

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 panic inside>

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 case.

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 learn.

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 ...

Deborah Sweeney
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 disability.

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.

Sincerely,

Sylvia Caras
146-5 Chrystal Ter
Santa Cruz CA 95060-3654

10 October 1997

cc: Lynn Toschi
ec: Lori Shepherd
ec: Rama Khalsa
ec: CINMHC

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 or bureaucratic.

<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 2000.

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.

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