Rooker: Don’t forget about brain injuries

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In 2000, the late Del. Chip Wood rum handed me a copy of the 1999 Senate Document No. 16, “Action plan for the appropriate treatment of persons with brain injuries in the mental health system,” and said, “You will need this some day.” That document had led to legislation that no longer permitted individuals with primary diagnosis of brain injury, suffering neurobehavioral challenges, to be admitted to state mental health institutions.

The report recognized the “lack of appropriate, specialized treatment in state mental health facilities”; detailed services that should be established for appropriate neurorehabilitative care; and recommended implementation of a Medicaid waiver for home and community-based services for people with brain injury. Nearly 15 years later, neither is in place in our commonwealth.

We can no longer ignore that brain injury can result in behavioral problems, along with the physical and cognitive challenges – changing a person’s relationship with family, friends and community.

Personal trials faced by our veterans and former National Football League players now suffering with brain injury are the same as those faced by members of our own communities.

My husband and I are acquaintances of state Sen. Creigh Deeds, and we hold him in our hearts. He knows of our personal loss and the work it moved us to do for families in Virginia, because of our son.

Have incidents involving brain injury survivors occurred that are similar to Deeds’ family tragedy? Very nearly.

Are we to await another tragedy to address the lack of appropriate care for brain injury survivors with mental health challenges?

I commend former Sen. Dudley “Buzz” Emick’s commentary (“Concrete mental health reforms within reach,” Feb. 9) and agree it is long past time for mental health reform. My purpose is to expand upon his words to create awareness and a call to action for the sake of more than 250,000 Virginians 18 years and older living with a disability due to brain injury for whom appropriate services are scarce, or are simply nonexistent in their regions. Reform must include, at a minimum, addressing the needs of the at-risk thousands in this population left without access to appropriate mental health services. Their unmet needs, and the unmet behavioral needs of all people with acquired brain injury, are directly related to current mental health reform initiatives.

Statewide, there are only 20 beds available for people with brain injury identified as “at risk to themselves or others.”

These are privately owned and not reimbursed by Medicaid or most private insurance.

The homeless on our streets include many people living with brain injury, for whom even access to an institution is denied.

I also agree with Emick that rather than building more prisons, money would be better spent providing safe environments and appropriate treatment for people “suffering at the bottom of the mental health system.” Recent studies in several states have shown that significant percentages of incarcerated people have sustained brain injuries.

And surely our commonwealth has the ability to develop cost-effective delivery of critical services for its residents while keeping families together.

I am just a mom who has learned the hard way more about brain injury than a non-medical person should know. Two years before my meeting with Woodrum, I had begun my full-time volunteer efforts to establish community-based services unavailable at that time to assist people living with brain injury and their families in our region. I had never seen a Senate document before or known how to address critical issues through the political process.

Since then, I contributed to the 2007 Joint Legislative Audit and Review Commission report “Access to State-Funded Brain Injury Services in Virginia.” It included three accounts of brain injury survivors in need of inaccessible mental health services and reported that a panel of Virginia neuropsychologists estimated that thousands statewide have neurobehavioral consequences resulting from their brain injuries.

Recommendations in the Virginia Brain Injury Council’s 2010 position paper, “Neurobehavioral Treatment for Virginians with Brain Injury,” included: state interagency collaboration to address the neurobehavioral problem in a statewide, systematic way; establishment of a multi-level neurobehavioral system of care; details for a demonstration program with suggested funding sources; and, again, pursuit of a Medicaid waiver. I was a member of the ad hoc committee responsible for its composition. Emick’s friend, the late Sen. Ed Willey, was right about killing bills with studies.

How many more studies and reports do we need? The few community-based programs across the state providing direct services to the greatest number of families in the brain injury community were all established through grass-roots efforts, not through studies. People’s voices and direct actions brought results. These partially state-funded programs assist survivors and families in rebuilding their lives but cannot provide specialized neurobehavioral care for those they serve.

I visited the General Assembly offices of Deeds and Del. Joseph Yost to ensure that they are aware of families “at risk due to neurobehavioral issues” in the brain injury community of our commonwealth. I add my voice to that of Emick, to encourage Deeds and all members of the mental health task force “to be expansive with regard to improvements in the entire mental health field” – including brain injury.

And I encourage families of brain injury survivors in the commonwealth to speak out for mental health reform and recognize it is their civil right to be included in appropriate services. “At risk” need not be a condition in which to live.


Originally published in The Roanoke Times on Feb 19, 2014