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The Advocate Oak Blog


Author: Dana Caro

The Traumatic Brain Injury (TBI) Act of 1996: Why it still matters.

By Susan Head, Senior Staff Advocate / PATBI Coordinator

On a bipartisan basis, Congress passed the Traumatic Brain Injury (TBI) Act of 1996 on June 27, 1996. Thirty-two days later President Clinton signed the bill into law, putting traumatic brain injury on the nation’s map for the first time as a serious, and potentially avoidable health issue.  Congress had two intentions in passing the TBI Act: the first was to reduce the incidence of TBI; and the second, to improve access to TBI health services across states. To these ends, the legislation authorized federal agencies to conduct research and prevention projects and created federal-state partnerships to encourage the development of innovative state TBI health programs.

According to the Centers for Disease Control and Prevention (CDC), a TBI is a "bump, blow or jolt to the head, or a penetrating injury (such as a from a gunshot) to the head," and is typically categorized as mild, moderate, or severe, based on the severity of the injury and impact on the person's functioning. 

Before the TBI Act was passed, we had limited knowledge about the extent of death and long-term disabilities resulting from TBIs. The Act authorized the CDC and the National Institutes of Health (NIH) to conduct TBI research directly and indirectly through grants to public and nonprofit private organizations.  Thanks to this research, we now know that an estimated 1.5 million Americans sustain a TBI every year. Of this number, 50,000 people die, while 80,000 to 90,000 experience a long-term disability. Tragically, the highest percentage of these deaths and injuries involve young people and seniors over 75 years of age. 

Since 1996, Congress has reauthorized the Act four times, most recently with the TBI Program Reauthorization Act of 2018. With each reauthorization, Congress has made specific amendments to the Act. The TBI Amendments of 2000 authorized NIH to conduct research on cognitive disorders and develop effective TBI rehabilitation therapies and programs. The 2000 amendments also authorized grant funding to state protection and advocacy agencies, including Disability Rights NJ, to provide individuals with TBI “information, referrals, and advice, individual and family advocacy, legal representation, and specific assistance in self-advocacy.”

In addition, in response to veterans returning from Afghanistan and Iraq with blast related injuries, including head injuries, in 2008 Congress authorized the CDC and NIH to work with federal military agencies and report on the incidence of TBI amongst veterans returning to civilian life. In a report submitted to Congress titled, Traumatic Brain Injury in the United States: Understanding the Public Health Problem among Current and Former Military Personnel,critical gaps in TBI “surveillance, epidemiology, clinical diagnosis, management, and rehabilitation” were identified. Crucially, the report provides recommendations to improve identification of TBI amongst military service members and veterans, standardize classification of TBI, strengthen research, and follow evidence-based prevention strategies. 

As part of the 2014 Reauthorization, Congress tasked the CDC and NIH with investigating TBI related scientific data and provide recommendations about additional research that would benefit children. The CDC recently submitted a report to Congress titled The Management of Traumatic Brain Injury in Children. As a result of this, and other research conducted, we now understand that children have the highest rate of hospital emergency room admissions of all age groups due to TBI. Critically, this research gives professionals working in the field of TBI treatment and prevention the data necessary to identify and close gaps in service systems, increase prevention initiatives and improve treatment outcomes for children with TBI.

In addition to extensive research conducted since the passage of the TBI Act of 1996, States across the nation have received federal TBI State Partnership Program grants on a competitive basis to strengthen and improve their TBI service delivery systems. New Jersey’s Department of Human Services was just awarded a 5-year/$1.7M grant from the U.S. Department of Health and Human Services, Administration for Community Living. The purpose of FY 2021 grant funding is to strengthen person-centered services and maximize the health and independence of people with TBI in New Jersey.  

Disability is a part of life. Some of us are born with disabilities; others, for a myriad of reasons acquire a disability at some point in our lives. What sets TBI apart, for all the wrong reasons, is that traumatic brain injury is potentially preventable. The largest percentage of TBI’s occur because of a fall, vehicle accident, assault, or firearm related suicides. These injuries typically occur instantaneously and have the potential to lead to life changing injuries. If you drive a car, climb a step ladder, play certain sports, or simply fall badly you are at risk of incurring a TBI. 

So why should federal legislation passed by Congress in 1996 still matter? Legislation is mostly an invisible factor in our lives, until it impacts us directly. 

The TBI Act of 1996 as reauthorized still matters, because until we have a cure, our first line of defense against TBI is still prevention. The second line of defense, if an accident occurs, is having access to state-of-the-art treatment and rehabilitation services developed from twenty-five years of cutting-edge research. 

When Can I Get Out of Here? The Olmstead Decision 22 Years On

By Michael R. Brower

On this date in legal history, we look back at one of the most momentous U.S. Supreme Court decisions in disability rights history:  Olmstead v. L.C.  On June 22, 1999, Justice Ruth Bader Ginsburg wrote for a 6-3 majority in holding that the unnecessary institutionalization of people with disabilities constituted illegal discrimination under the Americans with Disabilities Act.  In the years since, people with disabilities and their advocates have continued to fight for recognition as full members of society.  The history of Olmstead and the Americans with Disabilities Act informs future impacts on community inclusion advocacy.  Several of Disability Rights New Jersey’s litigation efforts reduced this type of systemic discrimination in New Jersey, but the risk and reality of segregation remains.

For some of us, June 1999 feels like only yesterday, while for others it’s ancient history.  Let me take a second to put that date in context.  The Matrix was still in theaters, Vice President Al Gore had just announced his run for President, and the Columbine High School shooting seized national attention only two months earlier.  The Berlin Wall fell less than 10 years before the Olmstead decision, while I write about it 22 years later.  Most importantly, however, President George H.W. Bush signed the Americans with Disabilities Act into law 9 years earlier, on July 6, 1990.  The bill included a built-in delay so that most elements would not kick in until 1992.  

The Americans with Disabilities Act addressed discrimination against people with disabilities in three main sections, or “titles”.  Title I prohibits disability-based discrimination in the workplace.  Title II prohibits disability discrimination in government programs.  Title III prohibits disability discrimination in businesses and other spaces open to the public.  

The Americans with Disabilities Act shares common themes with other civil rights laws, such as a prohibition on outright discrimination based on membership in the protected class (in this case, having or being perceived to have a disability).  It also requires accessibility accommodations because people with disabilities could still be excluded from full participation, even in the absence of discriminatory intent.  

It’s easy to think about accommodations like ramps to make a building accessible to someone who uses a wheelchair, closed captions for a deaf person, or braille signage for blind people.   For our discussion on Olmstead, the key is the government services provisions under Title II, which prohibits government programs and services from subjecting people with disabilities to discrimination by reason of such disability.  In these types of programs, governments must reasonably modify their policies to ensure they do not cause disability discrimination.

To understand how this law against discrimination created a right to be free from unnecessary institutionalization, we can look at the circumstances of Lois Curtis (the L.C. in the name of the case), Elaine Wilson, and Tommy Olmstead, the principal parties to the law suit.  In 1995, both Lois Curtis and Elaine Wilson, people with mental illness and developmental disabilities, had lived in a psychiatric unit of a state-run hospital in Georgia for several years.  Tommy Olmstead was the state administrator responsible to provide supporting services.  Their doctors agreed they no longer needed treatment there and could return to the community with appropriate supports. Both had lived in the community before and wanted to return, but they could not get the supports they needed, leaving them trapped in a state hospital.  That’s when Lois and Elaine sued Tommy Olmstead.

Remember that in 1995, when the plaintiffs filed suit, the ADA was still very new; it was signed into law in 1990 and went into effect in 1992. Lois and Elaine complained that, because the services they needed to live were only available in an institutional setting, Georgia’s systems of supports illegally segregated people with disabilities from the rest of society.  Like racial segregation, cordoning off separate parts of the state for people based on their disability status felt like illegal state-sponsored segregation.  

After four long years of litigation and appeal, 6 Supreme Court Justices agreed that unnecessary institutionalization isolates people with disabilities from family, social contacts, work, education, and culture in a way that “perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.”  The Court ruled that, because of those effects, states must provide community-based services to people with disabilities when the services are appropriate, the recipient does not oppose community placement, and if the services can be reasonably accommodated considering the public’s resources and the needs of others receiving services from the state.  In other words, unnecessary institutionalization of people with disabilities by failing to provide adequate community supports equates to illegal segregation from society.  

Though the Supreme Court delivered a huge win for Lois and Elaine, Olmstead did not automatically fix decades of institutional bias that permeated service systems for people with developmental disabilities and mental illness across the country.  Disability Rights New Jersey, then recently independent from state government, had been working with state officials to bring the ruling in Olmstead to a reality for people living in state psychiatric hospitals and developmental centers who wanted to leave.  For these people, however, the only option to get the services they needed were still large, state-run, segregated institutions for people with disabilities. After years of post-Olmstead advocacy, Disability Rights NJ found that hundreds of people who no longer needed to live in an institution and who wanted to return to the community had no choice but to remain in those segregated and restrictive settings.  

Disability Rights NJ filed enforcement lawsuits against the state of New Jersey in 2005 and in 2008 based on the decision in Olmstead.  The complaints alleged that New Jersey’s policies illegally segregated people with developmental disabilities and mental illness into large state-run institutions because it failed to provide sufficient community-based supports.  The lawsuits alleged that the shortage of community services created both a backlog of residents stuck in institutions who wanted to live in the community, and people living in family homes who needed more support stuck on a wait list almost indefinitely. The waiting lists placed those individuals at risk of institutionalization if their families could not keep up with their needs.

 In 2009 and 2013, Disability Rights NJ finalized settlement agreements covering those lawsuits that dramatically expanded the availability of community residential placements, diverted unnecessary institutional placements, and required the state to find community placements for eligible developmental center and state psychiatric hospital residents over a settlement monitoring period.  The state met and exceeded its obligations under the settlement agreements, which ended in 2018.  The results of these lawsuits reshaped how people with disabilities receive state-funded services, with a new expectation that community services are now the default, not segregation from the rest of society. 

The fight for full inclusion, though, is far from over.  People with disabilities, especially those with intense behavioral needs, complex medical needs, and co-occurring disabilities still face a system-wide bias towards institutional care in large institutional settings like nursing homes and state-run institutions.  Even when services like private duty nursing, personal care assistance, outpatient mental health treatment, or behavioral supports are available on paper, people who rely on them to live in the community would tell you that chronic understaffing leaves them teetering on the edge of institutionalization, and therefore segregation.  

Only when community-based services are of a quality and quantity to be readily available to support people in in their chosen setting will the anti-segregation mandates of the Americans with Disabilities Act come to full fruition.   The answer to “When can I get out of here?” should always be “Today.”

Voting in New Jersey: What Individuals with Disabilities Need to Know About the 2021 Election

May 8, 2021

By, Mary Ciccone, Director of Policy

Voting is a fundamental right. We, as a country and as a state, have held elections during all kinds of national and state crises such as the Civil War, the Great Depression, and more recently, Superstorm Sandy. Each crisis brought its own challenges to the voting process, but we have always managed to vote. Last year, voting during a global pandemic created a whole new set of public health concerns for the voters as well as the election officials. To mitigate the risk. Governor Murphy, through executive orders, changed the format of the primary and general election to all vote-by-mail. Due to the efforts of election officials, stakeholders who worked to educate the public, and the voters, New Jersey had the highest turnout ever for a general election.

In 2021, as the vaccination rate increases, and the pandemic hopefully dissipates, New Jersey will return to its traditional manner of voting – in person or no-excuse vote-by-mail. However, even though voting will return to its traditional process, voters should be aware of some new changes to voting.

How Can I Vote in 2021?

Vote-By-Mail

First, individuals who found vote-by-mail easy to use and wish to continue to vote that way, can vote-by-mail. However, unlike 2020 in which the ballot automatically was sent to each voter, an individual who wishes to vote by mail will have to fill out a vote-by-mail application to request that they receive a ballot. An individual can obtain a vote-by-mail application at the New Jersey Division of Elections website: https://nj.gov/state/elections/vote-by-mail.shtml. In addition, if you choose to vote-by-mail, you will still have the option to mail your ballot back, or you may drop it in a secure ballot box. Your individual county will identify the locations of the ballot boxes before the election.

In-Person 

For individuals with disabilities that affect their ability to handle a paper ballot, in-person voting on an accessible machine is an easier method to vote independently and privately. For other individuals with disabilities, being able to vote in person provides them with a sense of community, and as a result, they wish to continue to vote in person. For those interested in voting in person on a voting machine, you will have two options. You will be able to vote on a machine, on Election Day as has been the traditional option for individuals voting in New Jersey. In addition, New Jersey just passed a law allowing for individuals to vote early on a machine, which will go into effect for this year’s general election in November. Each county will have to offer nine days of early voting before the general election. Going forward, each county will have to offer early voting before the primary, although the number of days is less than the general election. The number of early voting locations will be determined by the county and depends upon the county’s number of registered voters. For individuals who are unable to vote on Election Day and do not like using vote-by-mail, you will now have the option to vote in person on a voting machine before the election.

Why Should I Vote in 2021?

Although 2020 had the highest turnout for an election in New Jersey history, turnout usually drops off in non-presidential election years. However, 2021 is an important election year in New Jersey. First, New Jersey has a race for Governor. In addition, all state legislative offices are on the ballot as well. Although voters regularly see the importance of voting for president, state elections can have a greater impact on an individual’s life. State laws and regulations govern such issues as voting, transportation, Medicaid and health care, and housing. So, it is important to remember that the individuals that are being chosen in November will be writing the laws that will impact your daily life. And now that New Jersey has in-person voting on Election Day, in-person early voting, and no-excuse vote-by-mail, voting has never been easier or more convenient. So, take a few minutes and vote!!!