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California Department of Rehabilitation

Traumatic Brain Injury Programming

Written Statement to the California Department of Rehabilitation (DOR)
Statement of Susan C. Hultberg, MA, JD

Public Hearing Entitled: Traumatic Brain Injury Services Stakeholder Meeting
October 24, 2013
Not everyone is able to travel to meetings. Please understand the limitations some people with traumatic brain injuries have in their function level. This does not mean that every person with a brain injury is intellectually incompetent or needs a service provider to speak for him or her. Some of us are mentally competent, even rather so, and we are able to express our concerns ourselves. But we may be dealing with other issues, for example, physical or perceptual/motor issues due to some past brain injury, that make it difficult for us to attend, maneuver, or participate in person at hearings. Some individuals who have experienced traumatic brain injury are not up to the task of coming to Sacramento and making public comment in person. We look forward to the day when our government in Sacramento will utilize video communication via SKYPE or similar means in order that we may provide our “public comment” face-to-face. At the present time we are pleased that the Department of Rehabilitation utilizes a teleconference system in order that we may attend meetings via teleconference. So having said that please note these remarks, and please add them to the official record of the meeting.
Introduction.
On behalf of the Brain Injury Network, I am pleased to submit the following written testimony to the DOR’s October 24, 2013 hearing regarding the issue of traumatic brain injury (TBI). Thank you for holding the hearing. Thank you also for calling attention to the issue of traumatic brain injury in California.
Overview.
The Brain Injury Network (BIN) is an all-brain-injury-survivor-advocate nonprofit organization that operates from Santa Rosa, California. We have organized and are doing collective advocacy for our community in California, in the United States, and on the world stage. Our community includes individuals with acquired brain injuries (ABI) from such causes as trauma, tumor, toxin, stroke, illness, hypoxic/anoxic injury, and aneurysm. We have formulated public policy for our brain injury community which is enunciated on our web site at http://braininjurynetwork.org/publicpolicyindex.html .
We invite representatives of the DOR and other California TBI stakeholders to visit our web site and review our public policy and advocacy statements on behalf of the ABI which includes the TBI survivor community.
Our Perspective.
There are at least 38,000,000 people in California. According to the United States Centers for Disease Control and Prevention (CDC), 2% of the U.S. population has TBI-related disability. That means that there are at least 760,000 Californians with TBI who might need TBI programming. There are also 58 counties in California. There is no way to stretch the around-one-million dollars in the TBI Fund that the DOR controls to all 58 counties or to all of the 760,000 Californians with disabilities from TBI. However, we believe that the DOR could work with other agencies to ensure that there were case workers who would be trained in TBI, would be knowledgeable about federal, state, and local TBI services, and who would have as a primary responsibility meeting with TBI clients and helping those who needed help to fill out paperwork.
We believe that the highest priority in our community is for the DOR, other governmental institutions, and private TBI stakeholder agencies to secure and protect the basic human safety net for members of our TBI community. We realize that there are many individuals in our community who are at different places along the disability continuum. However, since there is limited funding to help members of our community in our state, we have voted at our organization that the little bit of funding that is available ought to help the most needy and disadvantaged among us. That would include the people with TBI who are homeless, live alone, or are down to their last straw.
We would like to see any TBI funding spent to ensure that people without resources in our community are assured food, shelter, basic medical care, and basic transport. Therefore we believe that any agency that secures money from the DOR for TBI funding in the state must help individuals secure these basic necessities. So information and referral services plus helping people fill out paperwork is our top priority for services. No program should receive any kind of TBI funding from the California TBI Fund unless the program devotes program resources and manpower to helping individuals with TBI who have cognitive issues (such as reading, writing, comprehension, and organization difficulties) fill out necessary basic needs paperwork.
Paperwork might include applications for SSI, SSDI, food stamps, rent, benefits, low-income subsidies, and paratransit. It might even include helping a person balance his or her checkbook or to write checks for basic bills such as the rent. It might include helping people fill out forms to apply for low income programs for gas, electricity, and telephone services. Going further, we feel that in some extraordinary cases it might be required that a staff person drive an individual to a local shelter. Man hours and money should be allowed for that task as well.
Funds are limited, but if they were unlimited we would also recommend cognitive retraining and social interaction programs for individuals with TBI. But the issue is that funding is so scarce. Therefore, we say put those in our number who are truly desperate and destitute to the top of the line for funding and programming.
Human to Human Is Still the Best Way.
There is nothing to compare with face-to-face interactions between members of the TBI community and trained staff people. Therefore, we frown on the idea that there ought to be a TBI web site akin to the AT Network. That would be rather a duplicative effort since the AT Network already fulfills many functions that are applicable to individuals with TBI. There is also the point that many people with TBI cannot adequately negotiate a web site on their own due to their cognitive challenges. Additionally, there are already many web sites for people with TBI. The federal government has several web sites for people with TBI. Many agencies have web sites. Our organization has several web sites. The DOR itself has a TBI web page which could easily be enhanced. For example, it ought to include known state social support TBI organizations such as the Brain Injury Network. Frankly, Californians with TBI don’t need precious scarce financial resources spent on building and maintaining yet another web site. We need more counter workers, social workers, and staff people out in the field, out in the counties, who will help one-on-one with paperwork and other pressing matters.
Largest Counties or State-Wide Service Delivery.
Now we come to the issue regarding state-wide versus county funding. Clearly currently there isn’t enough money in the TBI Fund for the DOR on its own to do programming in all 58 California counties. Probably the DOR could get the largest payoff by funding programs in the largest counties. Counties with the largest populations are Los Angeles county (over 9 million), San Diego and Orange counties (over 3 million each), San Bernardino and Riverside counties (over 2 million each), and Santa Clara, Alameda, Sacramento, and Contra Costa counties (all over one million each).
That does leave outlying areas and smaller counties out in the cold. This is why we are hopeful that the DOR can collaborate and partner with agencies in the smaller counties to at least have one counter person at some agency in the county whose job it is to work with TBI people who need help filling out paperwork. In smaller counties, perhaps staff hours could be allocated to work with TBI clients one day a week. People with TBI could come in to a private room and sit with the case worker who could help them fill out their papers. It might be possible in certain circumstances to help several persons at a time. This could be accomplished at places such as the Independent Living Centers, the DOR’s own vocational rehabilitation offices, the county Human Service Departments, local disability departments at junior colleges, the Good Will, the Salvation Army, and local hospital outreach programs, etc. Carefully screened volunteers might be able to help any lead worker who was undertaking the “weekly” clinic.
We would really like to see DOR take the lead in implementing this kind of leveraged strategy out in the smaller counties where currently there aren’t enough, if any, TBI services. The DOR could offer training modules, perhaps a bit of funding, and advice to interested agencies that already have walk-in services, staff, meeting rooms, and an interest in serving the underprivileged. Every organization participating would need to understand that the primary goal of the “weekly clinic” would be to help people with TBI (who needed help reading, writing and comprehending) to fill out the necessary paperwork for basic needed services.
To be sure, any organization working with individuals with TBI must have necessary safety protocols such as legal standing, complaint and emergency procedures, accident forms, screened personnel, insurance, and basic training in TBI issues in order to carry on the work.
California TBI Advisory Council.
We at BIN were disheartened to hear that the California Department of Rehabilitation does not operate a California TBI Advisory Council. The California Department of Mental Health, which once oversaw the California TBI program, did maintain such a council. We at BIN are very hopeful that the DOR will reconstitute the California TBI Advisory Council in order that DOR will be able to apply for federal HRSA grant funding. It would be another source of money that could be tapped to help people with TBI statewide. Said HRSA funding could be used to help fund this county-by-county once-a-week clinic that we think could help our community statewide, especially in the smaller counties. We think it is a horrible mistake on the part of the DOR not to have a TBI Advisory Council in place. The state needs such a council to go forward with attempts at federal TBI funding.
Conclusion.
This commentary was presented for the Brain Injury Network by Susan C. Hultberg, MA and JD. Thank you for the opportunity to share the Brain Injury Network's viewpoint regarding governmental service delivery for Californians with TBI. I welcome any questions you may have. Please contact me at survivors@braininjurynetwork.org if you have any questions.
Susan C. Hultberg, TBI Survivor, 1985
President, Brain Injury Network - Advocacy for and by ABI (Acquired Brain Injury) Survivors (1998 to the present) (http://www.braininjurynetwork.org)
Author (2012) : Brain Injury Advocates: The Emergence of the “People with Acquired Brain Injury” Human and Civil Rights Movement http://braininjuryadvocates.com