Blueprints: Perspectives from New Mexico and New York
Interviews by Joan Belcher
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Judith Avner is the Executive Director of the Brain Injury Association of New York State (BIANYS). BIANYS is a statewide non-profit membership organization that advocates on behalf of individuals with brain injury and their families and promotes prevention. Established in 1982, BIANYS provides education, advocacy and community support services that lead to improved outcomes for children and adults with brain injuries and their families. BIANYS also offers a toll free Family Help Line, chapters and support groups throughout the state, prevention programs, mentoring programs, a speakers bureau, a video library and a publications library. BIANYS plays a central role in the development of public policy on the federal, state and local level. BIANYS is a chartered state affiliate of the Brain Injury Association of America, Inc.

Bil Schmidt has more than 20 years of experience working in the healthcare field. She is currently the TBI Program Manager for the New Mexico Aging and Long-Term Services Department that serves about 500 persons with brain injury. As a state employee she has worked in the Department of Health-Epidemiology Division and Long-Term Services Division and has been the NM Medical Board manager, licensing administrator for the Dental, Occupational Therapy, Nutrition and Acupuncture boards and a Planner for OSHA. She has also been the Executive Director of an assisted living facility for residents with Alzheimer's, Corporate Director of Development and Marketing for home health care and oxygen/durable medical goods companies and healthcare recruiter and has taught Communication at Eastern New Mexico University and the University of Phoenix. She has a Master's degree in Communication and an undergraduate degree in Journalism and Commercial Art.

What are the various state or federally funded services that you have available
for persons with brain injury?

J. Avner-NY: I would say that the biggest, single source for funding is the Medicaid Home- and Community-Based Service (HCBS) Waivers that the state provides through the State Health Department. The waivers are specifically for traumatic brain injury (TBI) and are provided through the Office of Mental Retardation and Developmental Disabilities (OMRDD), that among other people, serves people with traumatic brain injuries who are injured before age 22. The waiver program has Regional Resource Development Specialists who receive referrals from a variety of places, review service plans, and then work with the individuals and ensure eligibility for the waiver program. The State Health Department also provides a housing subsidy program that can help individuals obtain housing. These programs are administered through the Department of Health, Bureau of Medicaid Management.

Additionally, someone may be able to obtain services through Vocational Rehabilitation Services and this is provided through the State Education Department. There is a department called VESID which stands for Vocational Educational Services for Individuals with Disabilities. An adult who needs services for vocational rehabilitation and who may not qualify for a Medicaid waiver can still get services with the State Educational Rehabilitation Services through the State Education Department.

If you have a child who needs education-related services, that child could be eligible for services through Individuals with the Disabilities Education Act (IDEA) funding and other funding for Special Education through the State Education Department. Those programs all tend to be federally funded and then go through the state.

Then, in addition to that, if a person sustains their brain injury as an innocent victim of a crime (an innocent victim is part of the statutes), that person may be eligible for some funding through the Crime Victim’s Board. This program is unique to New York state.

There are 1600 people on the Department of Health Waiver and that’s specifically for traumatic brain injury services under the Community-Based Services Waiver. New York probably has the largest of those waivers in the country. Beyond that, it has been difficult to get real numbers in terms of who with brain injury is served under which waiver or in state education or in some of these other systems.

B. SCHMIDT-NM: Let me start out and describe the Traumatic Brain Injury Program. The program provides short-term services for people with brain injury. In the TBI Program we have three main services. We have strictly Traumatic Brain Injury Case Managers, Life-Skills Trainers, and Crisis Interim Services. For an individual to qualify for the program they have to have a traumatic brain injury.

We have a case manager in every region in the state. The service starts through the case manager who then refers it out to what we call Life Skills Trainers. Life skills training does a lot of what an Occupational Therapist would do (teaching persons with TBI to do their ADL’s, for example), but we do a lot more with money management, anger management and household organization…the social elements of independent living. Most of our life skills training contractors are Independent Living Centers [See “Plain Talk: An Overview of Public Funding for Brain Injury” in this issue of Premier Outlook for a description of Independent Living Centers].

Then, we have Crisis Interim Services (CI). We provide CI when the patient’s life is at imminent risk if they don’t have any other services, so we do everything we can to take care of them on a short-term basis. We provide therapists, homemaker services, whatever they need. However, we don’t usually do 24-hour care. Whatever we provide has to be directly related to the brain injury. For instance, we pay for prescription drugs, but only those related to their brain injury not other medications like those for diabetes. We don’t usually do temporary placement, because we pay for short-term services. We don’t do many placements; rather, we provide more home and community-based care. Placement burns up so much money so fast.

Given our limited funds, we did a priority report: what are the things in the Crisis Center that take precedent over everything else, that we pay for first? We pay for medication, therapy services and homemaker services. We also pay for start-up housing, which includes first and last month’s rent and utilities. This is usually enough to get individuals moved into an apartment, and we only do that once in a lifetime. Our Crisis Interim fund is only $75,000 for a lifetime and no more than $25,000 in a year. That is pretty generous and a lot more generous than most states.

Our system is not like a TBI waiver where you have an assessment and you have X number of dollars for what you need based on that assessment. Each case manager in each region determines how to give the most services to the most needy while ensuring that funds are available to support services until the end of the year. In the early days of the program, they would spend all of the available funds for services and then it would be gone. There would not be anything for a person who came into the program later in the year. We need to be able to fund services throughout the year. We try to address the most severe problems. We could pay for things like computers but we rarely do. We look for other resources to do that. One of the things that we probably do more than other states is that we pay for acupuncture therapy. So many of our clients with brain injuries also may have substance abuse problems and they are still having a lot of pain. Acupuncture can ease that pain without the use of narcotics.

What are the eligibility requirements (e.g., only TBI or inclusive of other causes of brain injury)?

J. AVNER-NY: The eligibility requirements vary depending on where they are in the system. The Education System would use the IDEA definition. The CBS waiver uses a
different definition, as does the OMRDD waiver. The definition of brain injury triggers different kinds of funding; different kinds of services.

There may be a whole range of causes of injury: shaken baby, domestic violence, blow to the head, gun shot wound or other kinds of assaults, falls, motor vehicle crashes, or anoxia. The cause is not the issue if it results in a brain injury. However, some programs differentiate between traumatic brain injuries and other kinds of acquired brain injuries. Each program has its own definitions; they may overlap, but they would be program-specific on certain things. That comes through federal legislation.

B. SCHMIDT-NM: The traumatic brain injury definition we use is: a blow to the head from an outside force. We include the most prevalent cause (that is, motor vehicle
accidents), but we also include shaken baby syndrome, falls and assaults that may include assault with a gun. Some states include anoxia, but we don’t. Additionally to qualify for the program individuals must have a diagnosis of TBI and be able to obtain an ICD-9 diagnostic code from a physician.
We are pretty generous with that. CDC has about 5 or 6 ICD-9 codes [diagnoses related to traumatic brain injury] and we have about 18 or 20 diagnostic options for eligibility,
as long as it is directly related to a blow to the head.

If programs are funded through Trusts or General Funds, where do revenues for these funds come from?

J. AVNER-NY: We do not have a brain injury or spinal cord injury trust fund in New York State.

B. SCHMIDT-NM: In New Mexico a $5.00 fee is added to every traffic violation ticket and is paid into a trust fund to support the services of our TBI program. The fund generates about 1.5 million dollars each year.

Additionally, we are finishing up the end of our Health Resources Administration Services (HRSA) federal grant. We have three project components to our grant: one is
evaluation of our current program, the second is leadership and advocacy, and the third is education with emphasis on the creation of a resource manual.

The evaluation project is being done by the University of New Mexico. They have done a phenomenal job of putting the tool together to reveal what is going on in the program. They created a computer program that statistically analyzes the data. They have pre-med and med students and others in the medical program at the University who were trained in conducting brain-injury interviews. They have gone out all over the state and interviewed individuals face-to-face about the program’s services. They have been trained how to ask the questions so that they get accurate answers from the person with the brain injury. They also do a second interview with a person who provides support for the individual with the brain injury (family member, case manager, etc.). They also interview providers about the program. The face-to-face component is the most important aspect of the interview for the persons with brain injury because it gives the interviewer an opportuntity to clarify anything the person may not understand.

Next we have a leadership and advocacy project, which is referred to as the Empowerment Project and which has been implemented as a collaborative effort led by the Brain Injury Association of New Mexico. Two-day sessions were given on three non-consecutive weekends over the course of a year. A total of 50 classmates have gone through the Empowerment training. The classes were actually like a weekend retreat. Individuals with brain injury, physicians, other health professionals, family members and providers have attended the training. During the first weekend “Brain Injury 101: Everything You Want to Know About Brain Injury” was presented. The second weekend was all about the resources that are available for persons with brain injury including the TBI Program. During the third weekend, which is the most phenomenal, classmates go through advocacy training called, “So You Want to be an Advocate.” We actually get legislators and others to pose as lawmakers for role-playing sessions preparing for the real thing when they will testify before the legislature. I have been to many, many, many trainings and conferences over the years and I have never experienced the almost magical bonding that has taken place during the Empowerment Project. It has been very powerful. So powerful, in fact, that when the classmates spoke before the 2004 Legislature in favor of a Brain Injury Medicaid Waiver, the bill passed both houses with one negative vote. The Governor vetoed the bill because of his commitment to not increasing Medicaid spending during the session.

The last project is related to education. We have created a print copy of a brain injury manual that is also available on a CD. It is also being produced in Spanish and in oral Navajo. It is written on a lay-person’s reading level, not on that of a medical/professional. However, resources are included that discharge planners, family members and anybody else will find useful. The resource manual, in its entirety, will be available on the web and will list local and national brain injury resources.

We also created what we call the “orange card” which is just a laminated card that has the contact number for the Brain Injury Association. We distributed it to discharge planners so that it can be passed out following an accident. This way individuals and families (or support persons) will at least have a place to start the process of identifying resources.

The HRSA grant requires planning for sustainability for the project activities continuation. We were successful in the New Mexico legislative session before last in getting an extra $100,000 to fund future awareness and education. With that $100,000, we are in the process of putting together a major awareness campaign which will include billboards, TV spots, radio spots and other events.

How many people do you currently serve?

B. SCHMIDT-NM: Most of the time, we serve around
500 clients per year. We never discharge anybody from the program because, with brain injury, they are always susceptible to needing services again. Rather, they go on an inactive status. The only time they ever get discharged from the program is
if they move out of state or they die.

Is there a waiting list for the services?

J. AVNER-NY: I do not know if there is a waiting list now. I don’t think there is. In OMMRD they have worked really hard not to have waiting lists.

B. SCHMIDT-NM: There’s usually not. Sometimes, we may have a waiting list because at times we get an influx of individuals needing services. What I try to get the case
managers to do is go out and do a preliminary assessment and ascertain whether there are life-threatening needs. If there are, the case managers figure out how to go ahead and start giving them at least minimum services. This is where the Life Skills Trainer typically comes in and begins providing ADL services.

You may be familiar with the Personal Care Options (PCO) Medicaid program now available in some states. In New Mexico this is a Medicaid program (not a Medicaid Waiver) that pays aunts, uncles, siblings or surrogate family members to assist with ADLs in a home and community based setting. The TBI Program’s Life Skills Trainers often assist in training these PCO caregivers in coaching techniques that are effective for persons with brain injury. Once the Life Skills Trainers have trained the family members they can concentrate on providing life skills training to other clients.

Where are the gaps in services?

J. AVNER-NY: One gap is in having enough providers and professionals who are able to provide quality services to kids with brain injury. There are all sorts of service gaps for people who don’t qualify for the waivers. This is due to a lack of funding. There are a lot of programs and services available like socialization kinds of services. There is difficulty in obtaining and being able to pay for cognitive rehabilitation services which become very important for individuals, both in their recovery and reintegration into the community. Those are real services gaps; some of that is money, funding.

What are the greatest challenges in your state regarding brain injury?

J. AVNER-NY: Identification of those with brain injuries and ensuring that there are enough providers and professionals to provide the services, especially to children with brain injury. Some of the challenges include building an awareness of the issues, as well as the challenges of working with individuals with a brain injury. One of the things consumers tell us over and over again is that they often find themselves as being the educators for those providing services to their loved one who has acquired a brain injury and then having to pay for the services. There still seems to be such an incredible lack of understanding and awareness about brain injury. It is not the same as other disabilities like mental retardation or being developmentally disabled.

The challenge within the education system is the identification of brain injury for kids requiring Special Education services. There is a lot of work that needs to be done in regard to these issues. I think we are all frustrated by the reluctance of the education system to really key in to the numbers of kids with brain injuries and their needs. While they need to provide services to the kids with brain injuries, they also need to educate everybody in the education system working with kids with brain injuries.

One of the major challenges and a great need in general is in regard to services for individuals with brain injuries who have behavioral challenges, in the adult population as well as in the schools. Additionally, there are a lot of people who have concussions or who sustain mild brain injuries whose injury is not recognized. Finally, there are a lot of kids who are identified as being learning disabled or as disruptive and having behavioral problems who really have brain injuries, but are not identified as having brain injuries. So, they are not supported appropriately. The issue with kids is dear to my heart.

B. SCHMIDT-NM: I think at the national level, and you can talk to everybody across the nation, the biggest challenge is to find funding, support and services that are needed. This
is true for all disabilities. We could use more funding in New Mexico for brain injuries, but I know that compared to other states we’ve got a pretty good deal with our Brain Injury Service Fund. We don’t have long-term services in this state for persons with brain injury that are appropriate for some. Additionally, counseling for the families and behavioral health coverage are also some of New Mexico’s biggest issues.

What is your state’s greatest accomplishment in the area of services for brain injury?

J. AVNER-NY: A significant accomplishment is having had, for 10 years now, the state statute that recognizes and establishes the TBI Program and identifies the lead agency. That predates the federal legislation and a lot of other developments. That is something that we are particularly proud of. I know that we are extremely proud of the waivers because they serve a large number of people and they include the housing program as part of it. The waivers are a major, major accomplishment - the cost vs. money saved. As may happen in other states, people were leaving the state to get services. Besides being a personal deception, this practice was extremely expensive. Now people can be served in
their community at a significantly lower financial cost. We are also working to stimulate a greater awareness of brain injury.

What changes do you anticipate for the future?

J. AVNER-NY: I think the direction we are going in, along with greater understanding, is really for a greater recognition of services. Every state has budget challenges,
we certainly do, but we have been able to move ahead. I would like to see more because the needs are more. With greater identification of individuals comes greater need and policy. We are watching what is going on at the federal level. I think there is a lot of discussion about the importance of supporting people in their communities and providing advocacy and other services and certainly the Olmstead Decision is part of that.

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