It is unknown how long the California TBI Advisory Council has been gone because the California Department of Rehabilitation (DOR) did such a good job at quietly burying it.
On July 30, 2013 Sue Hultberg, the Executive Director of Brain Injury Network (BIN) and a tbi survivor herself, noticed that she could not access any recent (2013) records regarding the California Traumatic Brain Injury Advisory Council. She called the California Department of Rehabilitation (DOR) to find out what was going on regarding the council. The person in charge of the TBI Program at the DOR advised her that he didn’t know anything about such a council, but that he would check into it and get back to her.
On August 2, 2013 Hultberg was told by the same DOR employee, the TBI program manager for the DOR, that the DOR had dissolved the California TBI Advisory Council. The council was not a required by the California Welfare and Institutions Code. The council took up a lot of staff time, and council members were very busy people who required per diem. He also said that the DOR had public meetings in lieu of a TBI Advisory Council and those public hearings were sufficient.
Hultberg asked if the DOR wasn’t going to attempt to get a federal HRSA TBI grant this (2013) cycle. She was pretty sure HRSA required that a state have a TBI Advisory Council to get HRSA TBI funding. The DR manager responded that the DOR is always trying to get grants, but he would not state that the DOR was trying for a HRSA grant.
Hultberg called HRSA in Washington DC to confirm her previous understanding which was that the state of California would have to have a TBI Advisory Council to even be considered for any HRSA grant money. HRSA only awards these grants once every five years, and this is the year that HRSA is funding for the new five-year grant cycle. Hultberg then advised two California assembly members (via their aides) to please look into the matter and to please try to get the California Department of Rehabilitation to reinstate its TBI Advisory Council in order that California can apply for HRSA TBI funding this year. (But that is not the only reason we need a TBI Advisory Council in California. Please read further.)
The fact that the recently-hired DOR TBI and Independent Living Section Chief didn’t know there was such a thing as a California TBI Advisory Council and he had to go find out about it before calling back is a sign that the decision to disband the council was made above his level. It is also an indicator that the DOR does not have much of an institutional memory because he did not know and apparently the DOR didn’t know that they cannot even apply for a HRSA grant if they don’t maintain a California TBI Advisory Council.
Some Historical Information about TBI Program Funding in California
The California Department of Mental Health (DMH) oversaw the California TBI programming for many years. The DMH had charge of the California TBI Advisory Council and the DMH managed to have an operating council. True, the council was dominated by programs directors from agencies that had California TBI grants (a different funding source than HRSA). The DMH administered those grants and saw to it that someone from each of those programs was on the California TBI Advisory Council. But there were also other individuals on the council. Most appeared to be individuals operating other TBI programs in the state, in other words, there were additional service providers on the council. However, there were always one or two people on the council who appeared to be TBI survivors or family caregivers of TBI survivors, and we at BIN were pleased with that.
In the year 2010 legislation was passed in California that turned the TBI programming in the state over to the Department of Rehabilitation (DOR). For several years (2010 to 2013) the DOR continued along with the TBI program that it had taken over from the Department of Mental Health. So since the year 2010 there had been the California TBI Advisory Council, or so it seemed.
The California TBI Model Project Sites
Part of the California TBI program has to do with something called the TBI Model Project Site programming. Therefore, the DOR also took over the TBI Model Project Site programming from the Department of Mental Health. There have historically been several organizations in the state that received California TBI Model Programming grant money. (This money comes from seat-belt fines in California.) The same organizations received the grant money year in and year out.
However, the DOR held a TBI Public Hearing on August 15, 2011 and at the public hearing a Deputy Director of the DOR announced that there would now be a competitive bidding process for the TBI Model Programming (seat-belt fine) money. (Apparently the actual request for bids was issued by the DOR in late 2012 or early 2013. This is a bit odd. The DOR did not appear to call for grant proposals. They called for "Information Responses." Source: Department of Rehabilitation - State of California Traumatic Brain Injury Request for Information Responses (April 2013 Report). We surmise that "the right parties" were told by the DOR that this announcement for Information Responses was the solicitation for grant proposals, but who would think that "Information Responses" would mean grant proposals? The people the DOR wanted to know, that is who.) The report from the DOR about the bids for Information Responses (translation: tbi services) was issued in April 2013.
There are around 20 proposals. All the current programs that have traditionally been receiving the TBI seat-belt fine money bid, but there are many new applicants. But to be sure there is not enough money to go around to all of these bidding agencies. Who has won these bids has not been announced by the Department of Rehabilitation. How they will select the winning bids has also not been announced, but to be sure there will be a lot of political activity going on behind the scenes as programs from different parts of the state vie for the limited seat-belt fine funds.
It might have helped the DOR to eliminate the California Advisory Council, because the council is supposed to give advice on what is necessary regarding TBI programming in the state. However, seeing as how the council was dominated by the very parties that were vying for the grant money this means most of them had a conflict of interest. This was probably too much of a sticky wicket for the DOR to handle. (This is why if there ever is a council again, it needs to have many serving members who are not the DOR’s own vendees, because those individuals definitely have conflicts of interest as to what TBI programming in the state ought to be.)
The Possibility of HRSA Federal Grant Money and Therefore Additional TBI Funding for Programming in the State of California
Another source of TBI funding for California could be the federal HRSA grant money, if only California (meaning the California Department of Rehabilitation) would apply for and get the money. The HRSA grants are competitive, and not all states receive them. However, by dissolving the TBI Advisory Council there is no possibility that California will get such a grant. Was this done on purpose? Perhaps the DOR just doesn’t want the hassle of more of a TBI program than the paltry Model TBI program that they already administer. Easier for the department. Not so easy for so many TBI survivors who live in counties that do not have one of the few TBI model programs.
DOR Public Hearings; the Priority that the DOR Help State-Wide the Californians with TBI who are the Most Disadvantaged; Minutes and Notice of DOR Hearings or Meetings
At the DOR public hearing on August 15, 2011 the Deputy Director of the DOR said that there would be limited TBI funding. Whatever the DOR chose to do with any additional TBI funding California had to be something that would be available state-wide. No one could be turned down or turned away for whatever services DOR offered to the TBI community. She then asked what people thought was the most important service. No one spoke up, so Hultberg, who was listening by telephone hookup, chimed in.
Hultberg, speaking for the Brain Injury Network, stated that the most important thing would be to ensure that any individual with TBI coming in to a DOR-administered TBI program as a client had his basic needs met. In other words, if a client with TBI came in it was essential that the DOR employee, counselor, specialist, social worker, or employee of these DOR-administered TBI programs know that when that client left the room he or she had a place to spend the night. The employee should know that the client had a roof over his head, a meal, a list of free health clinics, and a list of food shelters. If the person with TBI had severe cognitive impairments and needed help filling out paperwork to get services, he should get help filling out that paperwork from the employee. Also if it was required by the circumstances of an individual case, the employee should be allotted appointment time to drive the client to needed facilities, for example, a homeless shelter.
Further, Hultberg stated at the August 15, 2011 public hearing that since there were Independent Living Centers in most California counties and they all had employees, these employees could be the ones helping individuals with cognitive impairments with their safety net paperwork. Making sure that these employees in these county-wide community agencies got time allotted to helping these most disadvantaged in our TBI community was absolutely the highest priority for the California TBI survivor community. Also, using this as a priority for services was a way that people with TBI could be served in many counties, not just the couple of counties that happen to get the State of California TBI Model Project money.
Hultberg also stated that if there was any money left (from HRSA grant money or other grant sources) then it could be spent on such things as cognitive retraining, social programs and the like. Hultberg also pointed out that the current TBI Model Project sites with years of TBI programming under their belts had expert professional staff and those staff persons were very knowledgeable about TBI itself whereas the Independent Living Centers staffers generally did not match that level of TBI knowledge. She hoped that both kinds of providers could offer the kinds of service she was talking about. No one said anything at the public hearing as to what Hultberg had just enunciated.
Minutes of Hearings or Meetings. Hultberg also asked during the August 2011 public hearing if minutes were being taken, and after a pause the chairperson lawyer (who was from the California TBI Protection and Advocacy people) piped up that yes, indeed, there would be minutes. Later Hultberg had to call to find out where were those minutes? It had been a few months, but they weren’t up on the DOR website. Eventually minutes of the DOR public hearing came out. The minutes as eventually published had a lot of material that Hultberg did not recall being discussed while she listened in on the hearing. However, the most telling point was that not one word of what Hultberg said on behalf of the Brain Injury Network, a nonprofit that represents many, many TBI survivors here in the state of California, was in the minutes. Additionally, there were other members of the public at the meeting who made public comment. None of the comments from members of the public were made part of the official record. Therefore, we at BIN continue to worry that the DOR in California has little interest in preparing an accurate and complete official record as to what transpires at its TBI-related meetings and hearings.
Notice of Hearings or Meetings. Hultberg was on a list of people who was supposed to be advised of the August 2011 DOR public hearing in re TBI. However, she was not able to access the meeting by teleconference as promised by the DOR. Only by making some urgent last-minute calls the morning of the meeting did she gain access to the meeting. As for the April 2013 hearing, she didn’t hear about it at all even though she is supposedly on the DOR notification list. When she mentioned this to the TBI section manager he suggested she check the DOR site periodically. She was supposed to be on a notification list. Requiring an individual with TBI from a TBI survivor advocacy agency to take the extra step to check the DOR site as opposed to being notified like everyone else on the notification list is an example of discriminatory behavior on the part of the DOR. It is also a violation of Hultberg’s civil rights. It is also an example of how the DOR really doesn’t want input from a TBI survivor advocacy nonprofit organization (the Brain Injury Network) which exists here in California. Therefore, we at BIN continue to worry that the DOR in California has little interest in being truly accessible, transparent, inclusive, or accountable to individuals with brain injuries here in the state.
Our Take on the Current Thinking at the DOR
When Hultberg was speaking to the DOR Tbi program manager on August 2, 2013 she again brought up this philosophy about helping the most disadvantaged in our TBI community. If there are limited resources in the state for TBI programming (which there are) that the highest priority ought to be to help the most disadvantaged members of our TBI community. In other words, help those who have no family to help them. Help those who are so devastated cognitively that they cannot fill out applications and forms that would entitle them to the receipt of basic services. Help these individuals first. Make them the priority. Then as funding allows perform the other services.
The DOR TBI program manager responded that others presenting TBI program ideas to the DOR had their own ideas. The manager also indicated that he knew lots of individuals with TBI. Hultberg attempted to tell this new program manager that she represented many TBI survivors in the state. Hultberg also told the DOR TBI section manager that our community advocacy organization, the Brain Injury Network, has discussed this very issue regarding what our community’s priorities are for many years and we had made these safety net issues the number one priority, and he and the DOR ought to understand that.
He stated that some of the entities offering up TBI proposals weren’t interested in what Hultberg was telling him. They had other objectives. When Hultberg asked why the DOR couldn’t make this one of the programming requirements to get a grant, he stated that the DOR didn’t get down to the level of demanding particular program components. Too bad. Too bad for all of the TBI survivors who are lost, destitute, desperate, cognitively impaired, and alone. Too bad that with things as they stand, those folks aren't going to get the California "Independent Living Section" TBI program that might actually help them with their most basic and indespensible needs.
The Awkwardness and Inappropriateness of Having a Supposedly Independent TBI Advisory Council Composed of Only Stakeholders Who are Somehow Connected to the DOR System
Just in case the DOR does reinstate the California TBI Advisory Council, we will now ask, just how can a council be objective, fair, impartial, and transparent if all of its members are stakeholders vying for money from the Department of Rehabilitation?
Californians with TBI have a Right to a California TBI Advisory Council.
Look at all of the advisory councils that the DOR has: Disability Advisory Committee; Assistive Technology Advisory Committee; Blind Advisory Committee; Deaf and Hard of Hearing Advisory Committee; California Vendors Policy Committee; State Rehabilitation Council; and California Committee on Employment of Persons with Disabilities. But the TBI Advisory Council has been dropped!
We have a right to a TBI Advisory Council in this state. When it comes to getting federal TBI funding, HRSA requires such a council. All states making a good faith effort to produce excellent TBI programming have such a council. Without such a council, the state of California cannot even compete for this important source of federal funding, a HRSA grant.
But there are many other reasons that the state of California needs a TBI Advisory Council, and it needs some members on the council who are independent of the DOR. If only individuals who count on money from the DOR are on the council, it is merely a rubber stamp for anything the DOR wants to do. Also, individuals with brain injuries must be represented on the Council. This is in line with all of the transparency, inclusion, and equality requirements in this country. This is a free country, and individuals with brain injuries should not be left out of decision-making regarding any tbi programming that occurs in the state of California.
This dismemberment of the California TBI Advisory Council is a blow to the TBI survivor community in our state. It is a clear sign that the California Department of Rehabilitation, in our estimation never known for appropriate TBI programming, has not changed its ways, even though people from its Independent Living Section continuously insist that the DOR has changed its ways. We do not think so. We think this removal of the TBI Advisory Council is a way for the DOR to continue to operate as it always has, with virtually no survivor input and also no program transparency either.
Also, the DOR develops any community surveys that go out, and it has its own vendee agencies (agencies that receive DOR funding) distribute and oversee any survey taking. So we worry that the DOR gets to completely control the debate (via its surveys) as to what services are needed in the first place. And then the DOR fails to invite independent survivor advocates to its public hearings. And then the DOR also fails to include comments from the public or other people not in its system in its public hearing meeting minutes. This doesn’t sound like the American Way.
We urge that the California Department of Rehabilitation reconstitute a California TBI Advisory Council.
People in the DOR system are under too much pressure to get DOR grants to be unbiased and objective as to the real needs and requirements of the TBI brain injury community here in California. Therefore we also urge that the council include TBI survivor advocates who are free and independent of the DOR grant system.
We urge the California Department of Rehabilitation which advertises that it is inclusive and accessible regarding people with traumatic brain injuries truly be so.
We urge that the California Department of Rehabilitation keep its word when it says it is placing individuals on its contact list. We urge the Department to actually communicate with and give notice to people who are on the contact list regarding any meetings or other important business or discussions it is conducting in re its TBI programming.
We urge the Department to prepare and share on its website complete, accurate, and timely minutes of any TBI public meetings, hearings, or council meetings it conducts. If there is public comment made during any official meeting, hearing, or council meeting, it should be made part of the record. Even if there is unflattering testimony, public comment, or criticism of the Department or TBI services in the state, it should be made part of the record.
We urge the California Department of Rehabilitation to make basic assistance such as information and referral services and helping people with TBI fill out necessary paperwork its most important TBI community service delivery priority. We urge the DOR to require its vendees (agencies that get DOR contracts or grants for TBI programming) to deliver said basic services. The DOR is there to serve and to be helpful, is it not?