Advocacy by and for People with ABI (Acquired Brain Injury)
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As of August 1, 2007, the Brain Injury Network of Sonoma County, Inc. (BINSCI) is now officially the Brain Injury Network (BIN). Due to the historical nature of the material, the narrative herein has been maintained as orginally drafted.
This Is A Message From The Brain Injury Network of Sonoma County, Inc.
If you are someone with a brain injury I know it is going to be hard to process this information. It is going to take a long time. Twenty years ago I would not have been able to read my own stuff. But if you want to try, and you are one who needs some help understanding the material, advocates should be out there who can help you go through this material. There are going to be plenty of people who don’t even have a brain injury who are going to be scratching their heads reading this. This is like a little book. It is 23 pages long. If you want to take a stab at it, I recommend you print it up for reading at your leisure. It may take many readings. There may be something in these remarks that catches your fancy. There may be something you want to fight for in your own town. Go for it. I would be happy to communicate with you. Please Email the Brain Injury Network (BINSCI) at email@example.com any time. Santa Rosa Sue Hultberg
(The update as of September 25, 2006 commences on page nine. Pages one through eight are in great part the original 10-27-05 text.)
A Cautionary Tale and A Call for National Standards
Colleges must recognize that adult students returning to school after serious brain injuries need some special protections. The college system must adapt to meet the special needs of these students. We applaud the following “Rules and Regulations” of the Santa Rosa Junior College, which now appear on their website: “Santa Rosa Junior College is committed to an environment in which all employees and students are treated with respect and dignity. In addition, a significant aspect of our mission is to promote and maintain a learning community that is safe, lawful and responsive to individual rights.” These words are wise, but the actual implementation of the spirit of these words has been lacking at the Santa Rosa Junior College.
This matter commenced in 2000. The Brain Injury Network of Sonoma County, Inc. (BINSCI) is a nonprofit charitable organization in California dedicated to serving individuals who have sustained acquired brain injuries (from such causes as traumatic brain injuries, strokes, tumors, illness, etc.). The Network is operated by survivors, those who can and often do, speak for our community in the Northern California area. BINSCI commenced in 1998. We have had a long-term problem with the Santa Rosa Junior College (SRJC), its administration and staff. First their Disability Department saw fit to copy our model, without our permission and without utilizing the appropriate standards, when they initiated the SRJC Acquired Brain Injury Students (ABIS) Club, (what they meant to say is a Club for Students with Brain Injuries), in the year 2000. This occurred after Sue Hultberg of BINSCI visited their brain injury class and discussed BINSCI. It was at this point that a college staff person, who teaches a SRJC class for people with brain injuries, irresponsibly set up a copy-cat club for students with brain injuries but with little supervision, no screening of volunteers, no training for the student leaders, no complaint procedure, no insurance for off-campus events, no monitoring of money being raised, and no accountability. We complained about these matters in a letter to SRJC Superintendent Agrella dated March 3, 2002 (attachment #1).
Next, we repeatedly asked the SRJC to upgrade its service delivery for students with brain injuries and to exercise better control over the ABIS Club to make sure it was operated to standard. On May 18, 2002 (attachment #2) we advised Agrella and the College Board of Trustees that if they did not improve their service delivery, it was going to lead to problems, which it did. We received a letter from Agrella dated May 22, 2002 (attachment #3) in which he stated that he was turning the matter over to Dean Frongia.
BINSCI received one letter from SRJC Dean Frongia dated June 20, 2002 (attachment #4). She stated that there were no irregularities in the ABIS Club, the students were adults who did not need to be protected, the Club was a student organization over which the College had no control, and that the College was powerless to do anything. We responded on July 9, 2002 (attachment #5), that the Dean had it all wrong; in fact, we thought her whole take on things was frightening.
In our July 9, 2002 letter, we advised the SRJC that California Education Code Section 76062 required the SRJC Board of Trustees to review and authorize ABIS Club activities. Trained, screened, accountable leadership was required at the ABIS Club. A College representative needed to attend all functions from start to finish (which had not been the case). The Club needed to carry insurance, especially for its off-campus activities such as parties and swim parties. Adults with cognitive challenges needed supports, and how could the SRJC staff people, as trained professionals, not have seen that?
We also told them to investigate some alleged misconduct that we had been told about. We gave them a confidential file with the name and contact information of a SRJC student who had been in the ABIS Club who might have been mistreated. What follows is the story about that.
When a former college student who had been a member of the SRJC ABIS Club came forward to the Brain Injury Network for help, we, as advocates, stepped forward to assist him. The student, Mr. M, joined the BINSCI in the summer of 2002. He was suffering from post concussion syndrome, but he had slowly become aware that something was amiss with his bank statements. He had a sense that his troubles had to do with his having loaned his credit card to another student in the ABIS Club to help set up the SRJC ABIS Club website.
In August 2001 Mr. M received a bill in the mail from the Big Dog Company with another student's name on it. When he confronted that student on the SRJC campus, he told Hultberg that she got up in his face, swore repeatedly at him, and denied that she had charged anything from Big Dog Company to him. On 8-25-01 a Sheriff's deputy spoke to the woman via telephone about this charge, and she denied having ordered anything using Mr. M's credit card. The woman also concocted a story that she told the Sheriff's Deputy that an Internet hacker must have gotten his hands on Mr. M's confidential credit information. Mr. M initially believed this story. However, Mr. M was so upset about his confrontation with the other ABIS Club participant on the College campus that he dropped out of school.
When Mr. M joined the BINSCI, Hultberg eventually heard about this situation from him and another former ABIS Club participant who was now a member of BINSCI. At about this time, as he slowly recovered from his post concussion syndrome, Mr. M was becoming aware that there were many additional charges to his bank account that he didn't understand, but that he, not being very cognizant at the time, had previously paid. We saw more to this and in our July 9, 2002 letter to the SRJC Board we asked the College to investigate the mystery of exactly what had happened to this student when he was a student in their program. (See attachment #5.)
Right after we sent the July 9, 2002 letter to Superintendent Agrella, Dean Frongia called Mr. M and asked him what happened, and she asked if there was any evidence, but she never followed through on his claim. Mr. M told Frongia about the Big Dog incident and that now he thought he had paid a lot of bogus charges. The student was cognitively challenged and needed help from Frongia or her designate unraveling what exactly had happened, but she never followed through to help him in any way.
In the meantime, our local newspaper, the Press Democrat, ran a story about the ABIS Club on September 29, 2002 (attachment #6). The article was written from the perspective that these students with brain injuries were trying very hard to overcome adversity and they had this wonderful Club for support. It was quite uplifting. Hultberg (the author of this document and BINSCI's President) was interviewed by phone briefly by the reporter and Hultberg restated that she thought the ABIS Club was not being run to the standard necessary. Therefore Hultberg was put in the uncomfortable role of being cast as a service provider who thought they couldn't do it on their own. (As a caveat, may I state for the record that as a survivor of brain injury who started a survivor organization that is run to standard, I did not like being made the naysayer in the article.) In the article Dean Frongia once again reiterated her position that the ABIS Club was being run to the correct educational standard.
On October 2, 2002 (attachment #7), we once again wrote to Superintendent Agrella and the SRJC Board of Trustees. We stated that we had received no response to our 7-9-02 letter. We again suggested numerous program improvements. We requested clarification as to whether or not the SRJC was now operating its brain injury program to standard. We requested that the SRJC seek external review of its practices and policies vis-à-vis students with cognitive challenges. We also wanted to know how they were going to help their student with cognitive challenges, Mr. M, negotiate their complaint process to get a satisfactory resolution for what happened to him on campus. Agrella sent back a brush-off response on October 7, 2002 (attachment #8). He stated, "Dean Frongia, College staff and I believe that we have responded to your concerns as best we can."
The Brain Injury Network gave the College six months to follow through to help the victim student, and when Superintendent Agrella and Dean Frongia had done nothing, we decided we would conduct our own investigation. In the spring of 2003 we went through bank statements with the victim student. That is when we uncovered that the SRJC ABIS Club president, Kory White, had stolen money from the victim student over several months. Our organization and Mr. M went to the Sonoma County Sheriff. They opened a case. We turned over all of the evidence to the Sonoma County Sheriff's Department, and a few days later, on March 22, 2003, we turned over copies of the same evidence that we had unearthed to the Santa Rosa Junior College Superintendent Agrella and the SRJC Board of Trustees. (See attachment #9.)
Once again, we asked the SRJC (Agrella, et al) to conduct a thorough investigation. We now asked the SRJC to interview all the other students with brain injuries, both former and current, who had been in contact with the perpetrator in the ABIS student brain injury club to see if anyone else had been victimized. We asked them to remove the erring perpetrator from access to all of the students with brain injuries. We asked whether or not the College had implemented the brain injury program standards we had requested in September 2002.
When we advised the College Superintendent, Dr. Agrella, that since he had done nothing we had gone to the sheriff, Dr. Agrella responded in a letter dated March 26, 2003 (attachment #10) that rest assured the College would be working with the sheriff, but the College apparently never did. BINSCI never heard back from Agrella either.
The Sonoma County Sheriff and the Sonoma County District Attorney conducted their investigation with help from the Brain Injury Network. The District Attorney filed felony and misdemeanor charges in spring 2004 (attachment #11) and (attachment #12) and eventually, on a plea bargain, convicted the student, Kory White, with the misdemeanor charge. The conviction occurred on September 15, 2004 (attachment #14). However, the College did not appear to help the criminal authorities in this enterprise. They did not appear to conduct any further investigation into the activities of the perpetrator on campus. You would think that the College would be worried as to whether any of their other students with brain injuries had been or might become victims.
We were especially alarmed because by this point we knew that the student perpetrator had been given quasi staff functions such as counseling students as to which classes to take. She also operated unsupervised meetings for persons with brain injuries both on and off campus. She created software program applications that the Disability Resource Department was utilizing. She was also very high profile on campus having served on the Inter-Club Council as the representative for disabled students. She had also been written up in our local newspaper, the Press Democrat, as the leader of the students with brain injuries at the SRJC.
The College never acknowledged that they had a problem, and that students with cognitive challenges were exposed to an unsafe program. The College never responded to our requests for information as to whether or not they had improved their service delivery. The College never advised the victim student of any grievance and complaint procedure. Apparently the College never interviewed other students to see if any additional students had been victimized. The College continued to allow the lawbreaker to interact with other students in the Disability Resource Department Acquired Brain Injury Club, even after we had sent them the extensive evidence of the criminal conduct. (See attachment #9.)
We are especially bothered by the fact that apparently at this point the College staff thought that their only duty was to "counsel" the perpetrator that it is inappropriate to steal. They did not appear to realize that they had both a legal and moral duty to protect their other cognitively impaired students from the perpetrator. And since this matter involved a cognitively challenged victim, they also had a legal and moral duty to report the alleged criminal behavior to the local criminal authorities.
Even after all that transpired, on October 4, 2004 (attachment #13) the College was going to give the law breaker an award for being an inspiration to people with brain injuries. This very public award was to be made at the annual Brain Injury Awareness Day Conference that the College hosts for the brain injury community. So, the College was still touting this person as a model for our community! Just prior to the event, on Sept. 29, 2004, a delegation of persons from our organization, the Brain Injury Network (BINSCI), went down to the College and had a meeting with Dean Frongia and Nancy Chinn in Frongia's office, and asked that the lawbreaker not be given the award. The delegation consisted of a retired college administrator, MA; a retired pre-school teacher, BS; and a retired nurse, MS. All three have had moderate brain injuries, but the wonderful and compelling thing is that they all understood the ethical response expected of the College way better than Nancy Chinn, Dean Frongia or Superintendent Agrella.
One must note that at the meeting on Sept. 29, 2004 neither the BINSCI delegation nor the College people (Frongia/Chinn) knew that Kory White had been convicted (on Sept. 15, 2004).
At the Sept. 29, 2004 meeting Dean Frongia claimed she hadn't been around when all this happened. BINSCI had sent numerous communications to Dr. Agrella, Dean Frongia and the College Board of Trustees during the previous two and one half years, so she was indeed fully aware. She stated that there could be no action against the lawbreaker because there had been no conviction. (What about all of the administrative procedures available to the school?) When Frongia found out, at that meeting on Sept. 29, 2004, that the DA was prosecuting White, the Kory White Inspiration Award was withdrawn by the next morning.
Kory White was convicted on 9-15-04 in the Superior Court of Sonoma County, California. However, even with a conviction, the College never alerted the other students with cognitive challenges that the College's former model brain injury citizen and SRJC brain injury club president had finally been convicted of unlawfully taking money over a several month period from another ABIS Club College student. To this day, as far as we know, the College administration has chosen to keep everything quiet.
Included in the terms of Kory White's probation it stated "Defendant (is) not to work with brain damaged patients or belong to any clubs frequented by said persons." (See attachment #14.) There is a social interaction between the large brain injury community, many of whom have been students at the College at one time or another. We felt it is the duty of the College to call the activities, conviction and probation terms of the perpetrator to the attention of all persons with brain injuries who have been in their program, and exposed to the lawbreaker, for several years. And yet the College refused to make the matter public.
Also, as of April 22, 2005, Kory White was still the owner of the SRJC ABIS website address (per the Whois Registry Data). If she was still controlling the ABIS website, and perhaps email, then she still had a connection to the ABIS Club and that was a violation of her probation. Indeed, she renewed her ownership as of April 2, 2005. It looked to us as though this meant that persons attempting contact with the ABIS Club were sending messages that went through her to the ABIS Club. How the SRJC could allow this, considering the court order, is unfathomable to us. (Please also recall, that White took ownership of the domain using Mr. M's credit card, although he did authorize that one charge, and that one charge alone.)
Update as of July 27, 2006: BINSCI reported that White still owned the club website to the Superior Court judge who ordered the terms of White's probation. White thereafter relinquished her ownership of the domain name connected to the club.
Update as of September 8, 2006: BINSCI was alerted to the fact that throughout most of her probation period White still had access to the ABIS website through another portal. (Apparently the College had never taken steps to remove her access.) However, after BINSCI's plea to the Internet Service Provider (ISP), as of summer 2006 the ISP removed her from access. Thank you responsible ISP.
UPDATE REGARDING THE SANTA ROSA JUNIOR COLLEGE AS OF SEPTEMBER 25, 2006
1. In the spring of 2005 the perpetrator ran for president of the SRJC student body. How is it that this student, who was on probation for stealing from another student on campus, was even allowed to be a student at the College, let alone being able to run for the president of the associated students? A day before the election, on April 12, 2005, the Santa Rosa Junior College student newspaper, entitled the Oak Leaf, ran an article about the perpetrator. (See attachment #15.) The article, authored by Raelayna Alvarez, staff writer, was entitled “Who's fit to lead the A.S.?" and subtitled “Kory White’s Checkered Past”. In the article some of the details of White's conviction, at long last, came to light. However, it was the student newspaper, not the College administration, which finally brought the matter to light.
2. The matter had come to light now, thanks to students at the SRJC newspaper. Had this not been the case, we were about to ask, considering that the Superior Court has deemed it necessary to prevent the criminal from interacting with people with brain injuries during her probation period, just how were the other students on campus supposed to know, if the College wouldn’t even talk about what happened?
3. In the “Who’s fit to lead the A.S./Kory White’s Checkered past” article (see attachment #15.) there was one particularly interesting paragraph. It stated: When asked if a grievance was filed, or if the college played any role in the incident, Nancy Chinn, who has been the ABIS club advisor since it was founded, said, “The College is responsible for club activities, and this was not relevant to club activities.”
The College did have a complaint (which they ignored). (See attachment #5, attachment #7, attachment #8, and attachment #9). They did play a role, but they failed to act and they covered up. Additionally, instead of answering the question posed, Chinn made the inaccurate statement that “the incident” was not relevant to ABIS Club activities. We object to Nancy Chinn making the outrageous misrepresentation in print that what happened here was not relevant to club activities. First the College took no action to protect the victim student who was harmed while a participant in the ABIS Club, and now we have a staff member misstating the facts in the local College student newspaper, claiming this matter was not relevant to the ABIS. How much more relevant could it have been? And would SRJC make up its mind; are they or are they not responsible for SRJC ABIS Club activities?
4. What kind of message does it send to the public and the disability community, when someone can do what Kory White did, and then the College takes no action against her? It is sending the message that the College is a great place to come and take advantage of cognitively fragile, disabled students; the College will not act to protect them.
5. As of April 15, 2005, Kory White won the election for president of the associated students at the SRJC for the 2005-2006 school year. Therefore, there was now a convicted criminal on probation for a crime committed at the College in charge of the SRJC associated student’s organization. Some of those students, whom she apparently now represented, have had brain injuries. How was this student supposed to represent disabled students on campus, when she was expressly forbidden by the court order from “working with “brain damaged” people? This looked like a clear violation of her probation to BINSCI (but to no one else.) We were surprised White was even eligible to run for office at the SRJC, considering her probation. We were surprised she was even still at the school.
6. A second article regarding the case appeared in the SRJC student newsletter Oak Leaf in the May-June 2005 Volume CXIII, Issue 7 that came out around May 11, 2005. This article was entitled "Did the administration let Kory White off of the hook?" In the article Mr. M, the student victim, stated that the SRJC had ignored him. He was adamant that the administrators should have done more to help him. Hultberg stated, "The college did nothing to rein her in when they had proof of what happened. That is what's really disturbing." Hultberg was also quoted as saying that she had sent a letter to Frongia, Agrella and the Board of Trustees proof about the thefts in 2002 (sic). (That particular letter was sent March 22, 2003 to be exact.)
7. Hultberg at BINSCI sent an email entitled "Kory White Cover-Up at SRJC" about the case to SRJC Board of Trustee's newer member Marsha Dupree on 4-13-05. (She was elected to the Board after BINSCI's original series of letters to the Board.) She emailed back that she did not know about the matter, but would look into it. We never heard from her again, but we did hear from the SRJC's attorney (see below).
8. Mr. Henry, the school lawyer, sent Hultberg a letter dated May 13, 2005 referencing Hultberg's email to Dupree. (See attachment #16.) In that email, Hultberg had referenced the Oak Leaf "Kory White's Checkered Past Article" statement made by Chinn in which Chinn claimed that "the incident" was not relevant to club activities. Henry now responded that, "Nancy Chinn's statement adheres to advice previously given to her and is not a lie." (Oh really?)
Henry said it was not true that the school had done nothing and covered up. He claimed that he had looked at the police report and probation report and had spent considerable time on the matter. He said that in the context of (Hultberg's) email to Dupree that Hultberg's statements appeared to be defamatory. Henry stated, "In the context of your letter the statements you have made about identifiable college employees appear to be defamatory and you should consult with legal counsel before repeating them."
Hultberg says there is nothing defamatory about telling the truth. Hultberg stands by everything she has said. No lies on our side. Please recall that in the several years Hultberg had been writing to the school about the matter and about all of the problems with the SRJC brain injury program, Hultberg and BINSCI had never heard of or from this lawyer, Mr. Henry. Only now, right after the "Did the administration let Kory White off of the hook?" article appeared in the student Oak Leaf newspaper. Only now.
Mr. Henry had never interviewed the victim student, the student's advocate, or many other students in the ABIS program as to whether or not they, too, had been victimized. And yet he was the one responsible for coming to the legal conclusion that White's conduct was "private conduct" and that the school was not involved. Should not the determination as to whether or not Kory White's criminal conduct was private or SRJC - related conduct at a minimum involve an interview of the victim and an examination of the sheriff's record by the SRJC or its representative, such as the legal counsel, Mr. Henry? Mr. Henry stated in the letter dated May 13, 2005 to Hultberg that "he looked at the police report", (a red flag, there, as there was not a police department report; there was a sheriff's department report).
9. After Mr. Henry stated in his letter to Hultberg dated May 13, 2005 that he had looked at the police report, Hultberg checked with the Sheriff's Department on 5-31-05. Per the sheriff's records office, their reports are controlled documents and written records are kept as to who seeks or gains access to them. Per the sheriff's records office, there was no record that Mr. Henry ever sought or received a copy of the sheriff's report. Indeed, no one else from School and Legal Services of California (Mr. Henry's law firm) or the SRJC ever sought a copy or received a copy of the sheriff's department report. As of May 31, 2005, the only person who had ever sought or received a copy of the report was Hultberg from BINSCI. Per the Sheriff's Department, it might have been conceivable that the attorney, Mr. Henry, could have gotten a copy of the sheriff's report from the DA's office. However, a quick phone call on 8-5-05 to the District Attorney's office dispelled that possibility. According to District Attorney Passalacqua's administrative assistant, Donna Edwards, they never gave out such reports and would not have in this case.
10. Also, according to Henry's letter dated May 13, 2005, "It is not true that Dean Frongia knew about the allegations or conviction of Ms. White." We find it to be a slap in the face to our community that the SRJC attorney could write that considering all of the letters we sent them, Mr. M (the victim's) statement that he spoke to her on the phone about the matter, and the face-to-face meeting about White that occurred in Dean Frongia's office between Frongia, Chinn, and a delegation of people with brain injuries representing BINSCI on September 29, 2004.
11. Also, according to Henry's letter dated May 13, 2005, he believed that the SRJC lacked disciplinary authority to do anything about Kory White's "private conduct" and he so advised the college administrators. First, we at BINSCI disagree that it was private conduct. Secondly, if it is so (is it really so?) that there is no law in California requiring college administrators to deal with a petty criminal in their program who has taken advantage of another student with cognitive challenges in their school's program, then we have to make a law.
12. After receipt of the letter from Henry, BINSCI once again emailed Dupree, this time with the timeline of events and a copy of our letter to the Agrella dated March 22, 2003. In that letter we had said many things to Agrella including: "The most glaring aspect has been that not one person at the SRJC, not Dean Frongia nor anyone from the Disability Resource Department, not anyone on the SRJC Board of Directors nor the President of the SRJC, not ABI Club staff advisor Nancy Chinn nor anyone in the ABI group itself, offered to help this man" and, "One phone call by Dean Frongia to (Mr. M) was insufficient. She should have asked to see the written evidence. And then, Dean Frongia or her designate should have conducted a thorough analysis of the written evidence. She should have followed through. She didn't ." We never heard back from Dupree.
13. On April 24, 2005, we sent a complaint letter regarding this matter to the Western Association of Schools and College Accrediting Commission for Community and Junior Colleges. Mr. G. Jack Pond, Associate Director of the Commission, sent us a response letter dated May 9, 2005. He stated that the Commission did not have any authority to act in the matter, because the matter did not pertain to standards of accreditation. In a subsequent telephone conversation, we wish to state that Mr. Pond was very sympathetic in the matter, and we are grateful for his candor and discussion.
14. On April 24, 2005 we sent a complaint letter regarding this matter to The California Commission of Community Colleges, Chancellor's Office, and Internal Affairs, in Sacramento, California. We never received back an official response from them.
15. On May 31, 2005, Hultberg called the California Commission of Community Colleges, Chancellor's Office, to find out about the status of the April 2005 complaint. Chancellor Drummond's secretary referred Hultberg to the Chancellor's legal department. Hultberg then spoke to the legal department's secretary. The secretary (not a lawyer) gave Hultberg a legal lecture regarding California law related to the complaint. According to the secretary there is nothing in California law that would compel a college to deal with a student's "private conduct." (Again, we disagree that it was "private conduct". It occurred in the ABIS Club.) Hultberg asked the secretary if this was the Chancellor's official opinion and she said, no. Hultberg told her that she should not be giving Hultberg a legal opinion over the phone, and Hultberg would wait for a written response from thelawyer. They were very busy, the secretary said, and it might be six month before Hultberg would hear back from the Chancellor's attorney about BINSCI's complaint. Well, it must be really busy over there, because it has been over a year, and we still haven't heard back. Apparently the Chancellor's office has no authority or inclination to do anything about this issue, either. At this point the word acquiescence comes to mind. It is the act or condition of giving tacit assent.
16. On July 19, 2005 President Agrella and the Santa Rosa Junior College Board of Trustees appointed Kory White to the Citizen’s Bond Oversight Committee for a one year term effective FY 22005-2006. Apparently she was designated to help oversee the expenditures of millions of dollars of local SRJC tax bond money. Kory White’s probation did not expire until September 15, 2006.
17. On October 12, 2005 Nancy Chinn, the SRJC disability brain injury counselor, presented the ABIS program for college students with brain injuries as her "model program" at the annual California Post Secondary Association for Post Secondary Education and Disability (CAPED) conference.
(Amended to provide additional information October 21, 2006:)
Firstly, she didn’t develop a model program. She merely modified our model to suit her own needs. Secondly, she didn’t know how to carry it out properly and she has executed it very poorly. She didn’t do that alone. For years there was also the convicted petty criminal, Kory White. Give credit where credit is due. For several years the two of them worked together to operate the ABIS. Oh, and let's not forget Dean Frongia’s oversight.
But just remember that we at BINSCI came up with our organization and philosophy long before Chinn and White arrived on the scene. We are a survivor organization. It is anathema for us to see Chinn, the service provider, and White, the convicted petty criminal, claiming ownership of our philosophy. We weren’t happy when they adapted our philosophy to use at the SRJC. They literally made off with every visible element of our organization that they could identify. But even so, since they failed to understand the necessary underpinnings of it all, there were so many resultant procedural problems, as expounded on in this Cautionary Tale and in the attachment documents. And we at BINSCI were a witness to this. We had a choice, to let other survivors in Chinn’s class be subjected to substandard, literally dangerous, programming, or to explain to the SRJC, how to do things better. And so we have so explained.
For several years BINSCI sent letters to the college explaining the necessary elements that Chinn’s so-called model program was lacking. This gave Chinn some of the information necessary for her to refine her service delivery; to the point that she now claims she developed a model program. She and the ABIS also claimed in written information about the ABIS that they could mold leaders out of the survivor community. It takes a leader to train a leader. We see Chinn and White as no leaders, no innovators. Just imitators. Real leadership is not about self-promotion and sly craft. It’s about sacrifice, due diligence, training, and hard work.
Still, the ABIS has been a success at the SRJC, and we think that perhaps many students with brain injuries have benefited from interacting in ABIS. This is a testament to a community of people. People can socialize in any community. It is best done in a safe community, though, wouldn’t we agree? So make it safe. We at BINSCI know that we had no small hand in making the ABIS environment safer, even if no one at the SRJC will ever admit that.
Students in the ABIS have chosen to take their standard into the broader arena. Oh, little do they know about the long course of events. And their ally, the SRJC, is a backer of the ABIS, in word if not particularly in deed. It’s easy to give lip service to the idea that these students should have their own club, but it takes a lot more to ensure that the school runs it properly. So we still have a problem with the SRJC claiming the ABIS as one of their brain injury program elements when things go right, but as a student club over which they have no control when things go wrong. They have never truly clarified, in writing to us, that they control it. And we have a monumental problem with Chinn characterizing the ABIS as a model program to other service providers. No program that lacks accountability, controls and protocols can be considered a model program. Perhaps it has a good smattering of protocols by now. We campaigned for more than a smattering. We hope sound procedures have been implemented. We asked that these be made public. But we have never seen them. As for accountability, that has yet to be demonstrated.
18. In response to the 2005 events in the matter, BINSCI prepared the October 2005 version of this document and sent it out statewide to 100's of California college level disability professionals affiliated with CAPED.
19. In December, 2005 BINSCI commenced an email campaign in Sonoma County to call for a state law requiring college level personal to report suspected criminal conduct pertaining to their college students with cognitive challenges to law enforcement. In California K through 12 teachers are required to make such reports. When it comes to adult students with cognitive challenges we would like this reporting requirement extended to the college level.
20. On April 12, 2006, the SRJC Board of Trustees held a special meeting to participate in a workshop on effective governance. Two consultants from the California School Board Association (K through 12) facilitated the workshop. The student trustee was not invited to attend the workshop. We have no way of knowing, but we certainly hope that the workshop had something to do with improving their service delivery to adult students with cognitive challenges.
21. Kory White ran for election as SRJC student body president for a second year in spring 2006, but was defeated.
COMPLAINTS AGAINST THE SANTA ROSA JUNIOR COLLEGE
So, with regard to the Santa Rosa Junior College, here is a list of our complaints.
1. We are worried about the ethics of the administrators at the College. They set up an unsafe program for their students with brain injuries. When advised that there were problems, first they stated that there were no problems. When asked to investigate, they barely did so. Per someone at the DA's office, apparently later a highly placed person at the College claimed that if there was a problem in the student club, it was the students' problem, not the College's problem. Finally, when a clear problem was established, they chose to hush it up.
2. The College did not screen and adequately monitor the perpetrator. We feel that any volunteers (including other students) who work with students on campus who have cognitive challenges must be screened and supervised.
3. In order for the College "to act", they felt that the standard needed to be "a conviction". The standard that there "be a conviction" is too high. When clear and convincing evidence is presented to the College (as it was by us in 2002) that one student has victimized another student with cognitive impairments while both were in a college-sanctioned organization, the College should be compelled to take action. In the present instance, the lawbreaker was allowed to stay in the College Brain Injury Club, as an officer, for over two years after the allegations came out. The College claimed that they had no authority to take any action. Then the College claimed they could do nothing without a conviction.
4. Now there has been a conviction, Dean Frongia's own "standard". Still the College has not opened up about what happened. The College promoted the lawbreaker as a model for the brain injury community for several years. Therefore, we feel it is the moral duty of the College to make what happened public in order to protect the brain injury community from the lawbreaker.
5. The College violated the victim student's civil rights by not advising the victim student of his rights under their complaint procedure.
6. The College did not protect the other students with cognitive challenges from the perpetrator. Even when the local criminal authorities got involved, they did not carry out a complete investigation with the criminal authorities. They took the arbitrary stand that only a conviction would prompt them to take any kind of action. There was at least one additional student, Ms. B, who after hearing what happened to Mr. M told Hultberg that she had also been the victim of criminal conduct while in the ABIS Club. Hultberg was told that Ms. B had been told by someone in the Disability Resource Department to keep quiet about it.
7. Amended to provide additional information August 1, 2006: Ms. B did not accuse anyone in particular, and her statements to us were mere assertions, so we accuse no one. However, the point is that we don't think that anyone at the school followed through on her assertions. This student appeared to Hultberg to be more fearful than Mr. M and didn't want to rock the boat. The college, especially those at the college claiming to be disability advocates, should have led the charge for her. BINSCI asked Agrella to look into Ms. B's allegations in the letter to him dated March 22, 2003, and we suggested "gentle coaxing" to help get to the bottom of things in her case, but we don't think that SRJC followed through.
8. SRJC did not report criminal wrong doing to the authorities. Apparently they thought that the extent of their involvement ought to be to "counsel" the perpetrator. They kept and continue to keep the matter hushed up.
9. They planned to give the perpetrator an award for her "inspiration" to our community. They continued with the white wash that the perpetrator was someone to be emulated by the brain injury community.
10. They did not inform the student body of the conviction of the perpetrator, even though as part of the perpetrator's criminal conviction, she is to not work with persons with brain injuries.
11. They would not share upgrades, if any, in their service delivery, with the advocacy agency in the community for persons with brain injuries (BINSCI). We worry that the complaint procedures they have are too complicated for many persons with brain injuries to follow through on.
12. We also see an additional problem, and that is that the SRJC College does not have a person with the appropriate academic credentials in charge of its Disability Resource Department. The Dean in charge has a Ph.D. in Comparative Literature. This person is not qualified to formulate policy for students with cognitive challenges. Based on her response in this matter, she does not understand the special needs of people with cognitive challenges. Her naiveté early on, was unbelievable. Her oversight of her staff, the staff in the Disability Department, who allowed this unfortunate situation to occur, has been inadequate. Had there been someone with better training, better credentials, and more insight into the needs of students with cognitive challenges in charge of the College Brain Injury Club and the Disability Resource Department, perhaps this series of events could have been avoided in the first place.
13. We are trying to send a message that our brain injury community will not tolerate the kind of criminal behavior that occurred here. Instead of backing up our position, the Santa Rosa Junior College chose to do nothing, and later chose to drag its feet, and cover things up. We have heard through the grapevine that they were keeping things quiet out of sympathy for the perpetrator. We would like the SRJC to have a lot more sympathy for our entire brain injury community, which needs proper programs, not bungled situations thrust upon us by poorly trained, unaccountable Santa Rosa Junior College staff people. No doubt the real reason they tried to keep this quiet is because they were embarrassed about how poorly they handled this whole situation.
14. Sadly, the College reinforced the erroneous mind-set that persons with brain injuries who break the law should be tolerated and their criminal behaviors excused because they are too brain injured to know any better. Even worse, the college staff have, by their inability to set up a proper, structured, accountable program, buttressed the stereotypic attitude many people in society have that all persons who have sustained acquired brain injuries are too "feeble minded" to do anything on their own or to live by the same ethical standards expected of the rest of society.
15. We are also trying to send the message to College administrators that they are accountable when something such as this happens, both legally and morally. Frankly, the way the college administration handled this situation was even worse than the original series of crime (which went on for several months.) Denial, foot-dragging, ball dropping, covering-up, brushing-off; this is not what we would expect of our local junior college.
16. To this date the SRJC has not conducted an open, thorough, complete, public, objective investigation into this matter.
When the criminal incidents occurred at the Santa Rosa Junior College, we attempted to get someone to take action. Pleas for action were made to the SRJC Board of Trustees, college president, college dean in charge of the college's disability resource department, County of Sonoma Sheriff's Department, County of Sonoma District Attorney, Sonoma County Press Democrat newspaper, the Western Accreditation Commission, and the California College Chancellor's office. Of these, the only two who took any kind of action known to us were the Sheriff's Department and the District Attorney. We are grateful that the Sheriff and the DA did something. Our faith in a part of the "system" was restored. Unfortunately, the scope of their involvement was limited to the one single matter, Mr. M and the perpetrator. Nobody chose to carry the matter further, for example, by interviewing other students with cognitive challenges at the SRJC campus. By "carving out" the perpetrator's actions in the one single matter the larger picture was not addressed by the criminal justice system.
We have two systems here, the criminal justice system and the college system, and in order for the criminal justice system to intervene in the college system's affairs, well, there would have to have been some extraordinary problem with the college system, and apparently no body thought what happened here was extraordinary enough to broaden the investigation. Still, it would have been good for the brain injury community. It just wasn't going to be good for the college, and the college is very influential in Santa Rosa, California.
Consequently, the actions of the college were never challenged, except by BINSCI. The matter dragged on for years, thus exposing a great many students with cognitive challenges attending the SRJC to an unsafe situation. We were never able to get anyone to conduct a full-blown investigation at the college, which we believe was warranted under the facts as known to us.
The college was never compelled to take corrective action. College administrators and staff should not be allowed to act with such impunity. There must be accountability. If the best BINSCI can do is point out what happened and call for new protocols, standards, regulations and laws, so be it. We think we will have achieved something good for the brain injury community. And there is another way to look at it. If the college had not responded the way it did all of this time, we would not be at the point where we could make the many recommendations we are about to make. These recommendations, if implemented, are going to help a lot of people who are quite powerless in many respects.
17. New matter as of August 1, 2006: We have recently come into sufficient information to ask for an additional inquiry. We want a complete, public investigation into the drowning death at the Santa Rosa Junior College pool in June 1998, of a partially paralyzed, adult student with a traumatic brain injury, age 36, who drowned while in a crowded pool during an adaptive P.E. class. Two days later at the local hospital life support was pulled and he succumbed. The Sonoma County Coroner report states that, "He met his death at the Santa Rosa Junior College." We will develop additional information about this matter and furnish it in the future.
RECOMMENDATIONS VIS-À-VIS THE SANTA ROSA JUNIOR COLLEGE
1. The SRJC program for students with brain injuries should have brain injury program accreditation.
2. The SRJC ABIS Brain Injury Club must carry proper insurance for any on and off campus activities.
3. There must be adequate supervision of all SRJC brain injury program activities. That means that when the students with brain injuries are holding meetings or club functions, there shall always be a trained, accountable College staff person present from start to finish.
4. Students who mistreat other students must be dealt with swiftly and firmly within the College's own administrative process.
5. Students' privacy and dignity must be protected. The names and faces of students with brain injuries should not be on the website unless the students have given written permission. At one time the ABIS website showed some pictures of students with brain injuries, without even giving their names, but identifying the students as acquired brain injured students. Individuals may or may not want that private information about themselves advertised. We also object to characterizing people as acquired braininjured students. They are people with a disability. They should not be labeled.
6. Special complaint procedures must be developed for utilization with students with cognitive challenges. A process specifically designed to accommodate students with cognitive challenges must be developed.
7. There should be a campus disability ombudsman. One function of the ombudsman would be to help students with cognitive challenges negotiate any school complaint process. The ombudsman should not work in the Disability Resource Department, because sometimes the complaints are about the Disability Resource Department. The ombudsman should also not report to the Dean in charge of the Disability Resource Department. The ombudsman should be free to act under independent authority.
8. The Dean in charge of programs for persons with disabilities must receive extensive training on disability program administration.
9. The SRJC must advise all students with cognitive disabilities (and/or their conservators) who were in the ABIS club during the perpetrator's time in the ABIS Club or who were "counseled" by the perpetrator, about the criminal conviction of the perpetrator and the terms of the sentencing agreement.
10. We want the College to publicly report what measures have been taken to protect students with brain injuries so that this does not happen again. We want to know what their response will be if this sort of thing ever happens again. We also think that it would clear the air somewhat if someone else were the ABIS Club faculty advisor and if someone with better training were in charge of the Disability Resource Department.
11. What will the College do now that the perpetrator's is over, if she demands to go back into the Club? A by-law addressing this ought to be put into the Club's charter. Anyone convicted of a criminal act against a fellow club member should be permanently expelled from the Club.
12. The Santa Rosa Junior College has a duty to clean up this unfortunate situation that they created. They don't even see the repercussions to the larger brain injury community.
13. The SRJC's attorney has chosen to identify Kory White's illegal conduct as private conduct. We think it is obvious that conduct arising directly out of ABIS activities was clearly SRJC's responsibility.
14. It does not matter how much time has transpired. We still have not gotten what we asked for in the first place. We would still like the SRJC to conduct an open, thorough, complete, public, objective investigation into this matter. And we want them to publish their findings. We also want anyone who it is determined did not act in accordance with the law or with school procedures, or the school's ethical code, to be disciplined. Any SRJC staff or administrative person who knew about this matter and failed to take appropriate actions anywhere along the long time line of events should be removed from working with students with acquired brain injuries.
15. Updated as of August 1, 2006: After the perpetrator was convicted, the college should have disengaged its connection with the perpetrator's ABIS Club brain injury website immediately, if they wanted to honor the court sentencing agreement. Also, if the perpetrator was at that time still communicating with people with brain injuries through that website, or through emails to and from that web site, couldn't the College see that that was a violation of the Superior Court probation terms? The SRJC should not collaborate on SRJC club websites with persons who have a criminal record related to club participants or activity.
Recommendations for all Post-Secondary Institutions, for the Association on Higher Education and Disability (AHEAD), and Particularly the California Community Colleges Chancellor's Office and the Association for Post-Secondary Education and Disability (CAPED)
We would like all chancellors, universities, colleges, state-wide college networks, AHEAD and CAPED to take the following actions and instigate appropriate procedures for students with brain injuries in all colleges under your jurisdiction, direction, influence or control.
1. Create system wide protocols regarding adult college students with cognitive challenges for all of the colleges under your jurisdiction, influence, direction or control.
2. Incorporate all of the recommendations above for the Santa Rosa Junior College into the system wide cognitive disability protocols for all of the colleges under your jurisdiction, influence, direction or control.
3. Set up a handbook of applicable procedures for dealing with adults with cognitive challenges who attend college. That way administrators who may not have had sufficient training in how to administer programs for students with cognitive challenges will have procedures to look to. That way inexperienced and experienced classroom instructors will have procedures to look to. The team of persons who put the handbook together should include persons with extensive experience and credentials in rehabilitation of persons with cognitive challenges.
4. Train college staff to report any evidence of criminal victimization of their students with cognitive challenges to the authorities. Remove any staff persons who do not comport with the law on this issue.
5. Create college procedures for working with law enforcement in local communities when a crime is alleged to have been committed against a student with cognitive challenges.
6. Establish internal administrative procedures whereby a staff person, student, or volunteer who has victimized a cognitively challenged student can be expelled from the College.
7. Seek rehabilitation accreditation commission accreditation for all college programs for students with brain injuries. In lieu of this, state-wide college networks, Chancellor's Offices and/or AHEAD or CAPED could work to create their own accreditation standards for programs providing instruction to students with cognitive challenges on campus. If there is are master state educational plans that covers this area, disseminate the information. Improve said plans. Incorporate these ideas.
8. Refer to college students with brain injuries as students with brain injuries. Anybody with sensitivity that is in the field knows that it is politically incorrect to refer to people as brain injured people or braindamaged people and by extension, brain injured students. Persons with a disability are just, that persons with a disability.
9. Do not indiscriminately refer people to programs that you have not checked out. One of the problems with the Internet is that, in an effort to be helpful, but also to score highly in search engine rankings, to be seen, so to speak, many webmasters put everyone else that they can think of who is in their field in their website resource pages. The more websites refer to each other, the higher they rank. But what do you really know about these other agencies you are listing? How do you know that they are safe or good contacts? So, be careful whom you recommend on your website resource pages, or at least qualify your recommendations. The opposite problem can also happen, which is that a reputable entity is listed in the resource list of a less than stellar outfit, thus giving a degree of perhaps undeserved legitimacy to the listing entity. We wish there were a way to put a stop to that practice.
10. Make no mistake about it; any college club for students with cognitive disabilities must be considered an element of the college disability program. Said clubs must maintain stringent standards with college oversight and accountability. No college should be able to claim, on the one had, that a club for students with brain injuries is their model program, but when things go wrong, be able to claim that the club is just a student activity over which the college has no control. Colleges must be accountable and must take swift action if there are problems in their clubs for students with acquired brain injuries.
11. If professionals in AHEAD and CAPED who serve students with disabilities in post secondary college programs want to continue to be self regulating, they should at least be held accountable under some internal policing mechanism. AHEAD and CAPED should develop and publish their own Code of Ethics along the lines of the American Speech Language-Hearing Association's Code. AHEAD and CAPED should have a Board of Ethics. They should post a procedure for filing a complaint on their websites. The California Speech-Language Hearing Association even posts an actual consumer complaint form on its website.
12. New recommendation as of December 10, 2005: Please join BINSCI in campaigning for a state law that mandates that college level personal and trustees be required to report suspected criminal conduct or abuse against college students with cognitive challenges to local criminal authorities. K through 12 teachers are required to make such reports. We have discovered that this law needs to be extended through the college level.
This is why BINSCI is requesting passage of a law in California ordering that college level personal (staff, administrators, counselors, employees, trustees) be required to report any criminal conduct arising out of club activities to criminal authorities. If there is a gray area as to whether a reported or suspected activity is a club activity, the presumption should be made to protect the adult who is cognitively fragile, i.e. triggering the reporting requirement. No college personnel or college legal department should ever be allowed to conclude that conduct involving two students in a college club that relates directly to club activities is private conduct, and therefore out of the reporting sphere of the college. Further, when college personnel have reason to suspect criminal conduct outside of the club but on campus, or even off campus and totally unrelated to the college, against any of their students with cognitive challenges (gleaned through counseling sessions, etc.) they must be required to report that information to criminal authorities for further investigation and action.
The duty to report must be made abundantly clear in the legislation, and in the governance trainings for all California college boards of trustees. Additionally, this reporting requirement should be made clear to all college level staff, educators, counselors, and other college employees. There must also be disciplinary procedures in the law for colleges or individuals at college who fail to report criminal conduct to the criminal authorities. Below is a sample version of the proposed law. Please improve on it.
A Reporting Law to Protect Adult College Students With Cognitive Challenges Is Needed
The Brain Injury Network of Sonoma County, Inc., is calling for a law in California and in any other state where adults with cognitive challenges arising from brain injuries are attending junior college or four year college programs. In California, schoolteachers K through 12 must sign an oath that they will report suspected abuse against students to the criminal authorities. We want a law that extends this requirement to counselors, teachers, educators, administrators, etc. at the college level if and when the victim is an adult college student with cognitive challenges. We propose that the State of California enact a law that requires that any college employee who has or is given knowledge of alleged criminal conduct against an adult student with cognitive challenges report said suspected criminal behavior to local law enforcement and also to instigate the college internal criminal complaint process.
NATURE OF CONDUCT: The conduct suspected must be criminal in nature. The law should apply to any suspected felony or misdemeanor level misconduct (for example grand theft, embezzlement, etc.). The conduct may have occurred either on or off campus. The conduct must impact a student at the college who is in the protected class.
PROTECTED CLASS: All minor and adult students enrolled in college level brain injury special education or disability resource programs will be entitled to protection under the proposed new law. College students with other cognitive challenges and people with developmental disabilities will be covered. We are not averse to extending the law to additional persons with special needs who are served in college disability departments, such as people with visual and hearing challenges and people diagnosed with a mental illness.
TRIGGERING THE MANDATORY REPORTING REQUIREMENT: The reporting shall be required when the counselor or administrator or other employee of the college is in receipt of information which would lead a reasonable person to conclude that criminal activity against an enrolled student in the protected class might have occurred. Receipt of a written complaint form from the adult student with cognitive challenges will not be required as a prerequisite to generate the reporting requirement. If the counselor, administrator or other employee has knowledge, by other means, the reporting requirement will be triggered. For example, a student with cognitive challenges might confide to his or her college disability department counselor during a class or counseling session that he has been victimized. That would trigger the reporting requirement. The college president or board of trustees or dean might receive a signed letter with evidence of criminal conduct. That would trigger the reporting requirement.
TWO PRONGED APPROACH: Under this proposed law, college personnel will be required to report the alleged criminal activity which impacts the adult student with special needs who is in the protected class. College personnel will be required to report both internally (thus triggering a college’s internal process) and externally, to local law enforcement, for further investigation and review.
UNIFORM COMPLAINT PROCESS: The California or other state college system will create a uniform internal complaint process for all protected class student complaints across the college system. Individual colleges should develop a report mechanism with local criminal authority jurisdictions for complaint to their enforcement agencies.
INTERNAL COLLEGE PROCEDURES AND REPORT REQUIREMENTS: There must be a mechanism whereby the student who reports allegations is counseled to report said conduct via the college internal mechanism. He or she must receive counsel that he or she should prepare an internal college complain form, if the allegations have to do with another student or another person affiliated with the college. If the student is unable to prepare the form, the college employee or designated college employee, such as a disability ombudsman, must prepare or help the student prepare the form. In such a situation the college school employee must be required to submit documents both through the school’s internal reporting procedure and to local enforcement whether or not the student is able to prepare a school complaint form.
OMBUDSMAN: Each College will have a disability ombudsman. A function of the ombudsman will be to assist students in the protected class to prepare and submit any internal complain forms. Said ombudsman will also help the student negotiate the college’s internal complaint process. The ombudsman will also coordinate with local law enforcement on the case as required. The ombudsman will operate independently of the Disability Resource Department and will not report to the Dean in charge of the Disability Resource Department.
AFFIRMATIVE REQUIREMENT: Under this proposed law, the college personnel including the ombudsman will have an affirmative duty to report alleged criminal conduct, for further investigation, to local criminal authorities. This law should apply to college Boards of Trustees members, college presidents, college “of counsels’ (school lawyers), academic vice presidents, deans, department chair persons, professors, teachers, tutors, counselors, disability resource department personnel, special education teachers, therapists, in short, anyone having the duty and responsibility to work with or oversee programs for adult students with cognitive challenges who are enrolled in special college programs for disabled students.
Please join us in calling for such a law in your state.
ADDITIONAL COMMENTARY AS OF AUGUST 1, 2006
We invite readers to study the numerous landmines stepped on by the SRJC personnel in their attempt to emulate the Brain Injury Network model. We seek to highlight the problems in order that the rest of you not make the same mistakes, at the expense of your students. Careful planning is imperative to minimize any harmful interactions between service professionals, and vulnerable adults with cognitive challenges who are in the college system. We thank those of you who truly know what you are doing and ask you to accept our apology and not to take this commentary personally, if you know that our discussion does not apply to you.
Adults with cognitive challenges who enter or return to a college setting have a right to a safe, theoretically solid college experience. All programs put forth for utilization with adult students with cognitive challenges should undergo rigorous professional review prior to implementation. We recommend that any program initiated by the California college system or recommended by CAPED or any other professional organization, be tested at one site and be assessed and critiqued by a series of professional evaluators. We expect the brain injury community to be given the opportunity to make comment regarding any test model. Recommendations for any model to be utilized in the California college system should ultimately be placed before a commission in order that the commission review and approve its efficacy prior to widespread implementation.
At that point, and only at that point, should any organization, such as the California Chancellor’s Office or CAPED, announce that it has endorsed a program, such as a college club for adult students with acquired brain injuries, as a college level program suitable for inclusion in college campuses across California.
The utilization of the correct underlying theories vis-à-vis the education of adults with cognitive challenges in a college setting should result in a reduction in harmful programming being directed at these types of adult students. No program design can guarantee complete safety, but solid, theoretically based programming should ensure a more optimal level of safety for the students. That means that educators who work with adult students with brain injuries should undertake more in-depth study of the theoretical constructs that have risen up over the past few decades for working with this population.
In answer to a query regarding why people not connected to the college system are receiving this information, may we say that this is a cautionary tale that anyone connected with the brain injury community or movement should process. Therefore, this information is being sent to survivors, caregivers, agencies, service providers, and known policy makers who work to help persons with brain injuries in some respect. This information is being sent to generate dialogue and critical peer review of the “ABIS Model Program” prior to its being implemented by CAPED or the California college system or anyone else as a “model program” for college students who have sustained an acquired brain injury. We think that before any such program is foisted upon the larger brain injury community that a critical analysis of its rehabilitative, psychosocial, legal, ethical, and social effects be undertaken.
It has dawned on us that new laws may be needed to protect adults with cognitive challenges who attend colleges all across the United States. It may be possible for the interested parties listed above to help formulate and pass laws that will help the millions of survivors in the national brain injury community. Therefore, this information is now being disseminated across the United States to the stakeholders we can think of in the hopes that you will join BINSCI in calling for these laws, standards, and reforms.
New, effectiveAugust 1, 2006: BINSCI is calling for a system of regulation, review and standards nationwide for utilization in college disability programs.
Regulation, Review and Standards for College Level Disability Programs Are Needed
REGULATION OF COLLEGE DISABILITY PROGRAMS: There needs to be regulation of college disability programs. If someone is mistreated at a hospital or nursing home, in California there is a state agency regulator that can be contacted so that an investigation will be launched and conducted. There needs to be such a system for college disability programs, so that if there is a criminal event or harm or even death comes to a student when they are at a college, the student or the victim’s family, or other concerned citizens can make a complaint that will be investigated, and appropriate corrective action will be undertaken. As it is now, who even has the authority to investigate a college’s disability programming or order a college to improve the quality of its disability related programming?
REVIEW OF COLLEGE DISABILITY PROGRAMS: Who reviews these college disability programs to determine if they are up to standard? What is the standard they must meet? Has anyone set down a standard that they must meet to qualify as a good disability program? We don’t think so. Sometimes we have self-promoting service providers who work at colleges announcing to the world via conferences, web sites, etc. that they have instigated model programs, or that they have created the best programs around. Who is to say that that is true without sophisticated, theoretical review? And sometimes there will be crackerjack programs, but how can they stand out when they have to compete with lesser quality programs if there is no independent, critical review that establishes what truly is a good or even exceptional program. Such review will also help consumers make educated choices regarding their college disability program selections. Statewide and even nationwide standards, along the lines of CARF standards and methods of review, are needed in these college disability programs.
PUBLIC ACCESS TO INFORMATION ABOUT COLLEGE DISABILITY PROGRAMS: Further, in California members of the public may review the statistics about hospitals, nursing homes, etc. Where is any record about the efficacy of a college disability program maintained, that the public can research in order to decide which college disability programs are good programs? Information is maintained regarding whether or not hospitals and nursing homes meet standards to properly care for their patients. Deficiencies are reported. It is our understanding that no such statewide regulatory system exists regarding college disability programs. If and when regulations are formulated regarding college disability programs, there will need to be a database the public can access to read about the quality of a college’s disability related programming, the deficiencies of any program and the corrective actions required to meet basic standards.
Although our experience is in California, BINSCI invites residents of other states to pursue similar legislation in their own states.
What goes on in Santa Rosa, California, is just a microcosm of the whole United States. So we invite people reading this in other states to share in their own environment this material with survivors of brain injury, family members of survivors, and service professionals. We invite institutions, agencies and governments to study this material. We invite college and school boards; local and state level departments, hospital and medical care systems, state and federal political entities, professional organizations, nonprofit entities, and regulatory and policing agencies, to study these materials. We would like international, national, state and local agencies that represent people with brain injuries to incorporate our recommendations in their public policy mandates.
We also invite individuals such as ADA specialists; attorneys specializing in civil rights, benefits or personal injury; specialists and coordinators (community reintegrative, family, information and resource, prevention, respite, technology, and recreation); disability advocates; disability counselors; disability service providers; legislators; medical specialists (including neurologists, neurosurgeons, neuropsychiatrists, nurses, physiatrists, clinical psychologists, rehabilitation psychologists, and neuropsychologists); policemen; private practitioners; program administrators and ombudsmen; psychiatric technicians; rehabilitation specialists; social workers; special education teachers; and therapists (cognitive, occupational, movement and orientation, physical, speech, etc.); and the press to review and act upon this material. Frankly, we would like any caregiver (anyone who cares for these people) or anyone who flat out cares about these people, to digest this material. We would like anyone who supervises programs for people with brain injuries; or treats, rehabilitates, educates, counsels, or job coaches people with brain injuries, to reflect on this material. We would also like anyone who claims to represent people with brain injuries to read and act upon this material. Sometimes I feel as though there is a big bus carrying all of you down the road on your missions in the service of the brain injury community, but the survivor of brain injury was accidentally left off the bus at the side of the road And now there is one last category of people, survivors of brain injury, like me, who run brain injury agencies or support groups. If you are someone like that, I would very much like to make your acquaintance via the Internet. Would you like to interact? Please email me. We should network more.
Thank you for reading.
Sue Hultberg, M.A., J.D.
Thesis: Traumatic Brain Injury Rehabilitation and Compensation: Survivors’ Perspectives (1996)