DELAWARE AND NEW HAMPSHIRE P&As' SHARE AN IMMPRESSIVE ARRAY OF PATBI INITIAITIVES DURING RECENT WEBCAST

On August 5^th NAPAS, with financial and logistical support from the Human Resources and Services Administration, hosted a free webcast for P&As entitled Working with Medical Professionals to Enhance PATBI advocacy.   The webcast was an opportunity for the 51 individuals registered, to hear about innovative and successful PATBI initiatives in Delaware and New Hampshire, follow along with powerpoint slides, and ask follow up questions of the five member panel.  Anyone with access to the world wide web can listen to a full re-broadcast by going to www.mchcom.com and clicking on "live broadcasts."  Below is a summary of some of the tips for P&As and PATBI initiatives shared by the five member panel.

Brian Hartman, Director, at Delaware Community Legal Aid, Disability law Program, (the Delaware P&A)

Mr. Hartman briefly explained the P&As role in establishing a TBI Advisory Committee which has worked to obtain passage of an impressive array of state laws and regulations in the areas of TBI prevention, TBI assessment, and service expansion.   Mr. Hartman explained that when the PATBI program began, Delaware had no viable interagency group or committee to engage in systemic planning on behalf of persons with TBI.  The P&A convinced an existing cross-disability council to establish a Brain Injury Committee.  It is chaired by a Board member of the Delaware chapter of the Brain Injury Association and the P&A serves as Vice-chair.

The Brain Injury Committee includes several members representing public and private health care agencies, including 3 private hospitals; a neurohealth provider; Easter Seal; and multiple state divisions (public health; child mental health; adult mental health; developmental disabilities; aging and physical disabilities; and vocational rehabilitation). The Committee benefits from this set of health care representatives when analyzing State legislation, regulations, policies, and initiatives and promoting training events. To learn more about the Committee and its membership go to: www2.state.de.us/scpd

Mr. Hartman explained that prevention initiatives have been of particular interest to the health care providers on the Committee, Just a few prevention initiatives spearheaded by the Committee, include: To read the individual Delaware bills and regulations mentioned in this article go to: [www.delregs.state.de.us/index/html] or Legislation www.legis.state.de.us/Legislature.nsf]

1. an Airbag Safety law to stop repair shops from installing fake or non-functioning replacement air bags in vehicles; and to clarify that existing laws require owners to maintain (not disable) air bags, just as they are seat belts;
2. a lowering of the DUI blood/alcohol level to .08;
3. a bill to prohibit and number of passengers in cars driven by individuals with learning permits;
4. a bill authorizing suits against taverns and restaurants which sell liquor to inebriated patrons who then injure others through vehicular accidents; and
5. a bill to create driver qualifications and require helmet when using recreational motor scooters.

The Committee also worked to support many bills that addressed issues beyond prevention of TBI, including:   

1. a bill, drafted by the P&A, to address the problem that Delaware lacks adequate statistics on children with TBI. In 2003, the public school system identified zero students with an IDEA classification of TBI.  The bill, enacted in July 2004, eliminates financial disincentives to classify TBI students;
2. a bill, drafted by the P&A, to amend Delaware's Nurse Practice Act, so as to authorize competent individuals to delegate health care acts to laypersons which they could normally perform themselves, but for functional limitations;
3. a bill to expand eligibility for violent crime compensation to include victims of domestic violence;
4. a bill to facilitate the transfer of institutional funds to cover community support costs for individuals with TBI and other disabilities leaving institutional settings (often called "money follows the person");
5. amendments to proposed child abuse regulations, to remove a provision requiring an "impact injury", so that "shaken baby syndrome" could qualify as child abuse and
6. amendments to proposed day care regulations, so as to require children using playground equipment in "day care settings" to wear helmets.

Beyond policy change, the Delaware P&A coordinated with the Committee, on other systemic initiatives, including: 

1. As a follow up to the bill promoting special education identification of students with TBI, the Committee supported a seminar by a neuropsychologist on screening, identification, and profiles of juveniles with TBI.  The seminar was sponsored by targeted public educators.  Materials from the training were prepared by the Chief of Rehabilitation Psychology & Neuropsychology Service at the Mt. Sinai School of Medicine.  Materials can be downloaded at: [www.mssm.edu.tbinet]
2. As a follow-up to the seminar on TBI screening and assessment, the Committee set up a subcommittee to review special education handbooks on TBI which the P&A obtained from a private publisher.  The Committee plans to choose 1-2 sets of materials, seek funding for a bulk purchase, and supply them without charge to the 98 public school psychologists in the State.  These proposed school psychologist materials can be downloaded at [www.lapublishing.com]
3. The health experts on the Committee assisted with my critique of State agency regulations revising eligibility standards for TBI survivors.  For example, assessment tools used to evaluate TBI may be quite different than those for mental retardation.   The State adopted some of our recommendations.
4. The Committee made recommendations on how to improve several Medicaid waiver applications.  The recommendations aimed at increasing the likelihood that these waivers would provide community supports needed by individuals with TBI.

Lastly, Mr. Hartman encouraged P&As to explore whether their state has a "ThinkFirst" chapter. "ThinkFirst" is a national injury prevention foundation supported by the American Association of Neurological Surgeons [www.thinkfirst.org].

Ms. Julia Freeman Woolpert, PATBI Advocate at the Disability Rights Center (the New Hampshire P&A).

Ms Freeman Woolpert explained a variety of P&A projects focusing on collaboration to develop state capacity to assist people with the neurobehavioral consequences of TBI.  She had the benefit of returning to the NH P&A after working for several years as the Coordinator of the State TBI Grant Program, Project RESPONSE.  She has used her knowledge of TBI resources in the state to promote information sharing across agencies and multi-agency support for system change.Examples of  New Hampshire PATBI collaboration includes:

1. Project Response and PATBI serving on each others' advisory groups;
2. Arranging training to the P&A from Project RESPONSE about TBI neurobehavioral issues;
3. Developing a training program and accompanying materials on "advocacy" for Families and Survivors" with funding from Project Response
4. Working on a training on "advocacy" for school district professionals with funding from Project Response
5. The state BIA and PATBI serving on each other's advisory boards
6. Serving on the State BIA's legislative committee and helping the committee track rules and laws affecting individuals with TBI.
7. Working with the state BIA to maintain grassroots awareness of and support for the P&A waiver wait list litigation and for expansion of the state's acquired brain disorder waiver.

The P&A provided information on several other PATBI initiatives, including;

1. Improvement of school-based services to individuals with TBI by removing disincentives for schools to identify service needs and a broadening of special education TBI coding so that it covers other acquired brain disorders.
2. Educating medical personnel about TBI and supports for individuals transitioning back to the community or post-acute care settings
3. Requiring public agencies to provide alternatives or make it easier for individuals with TBI to use automated menus on phone systems
4. Full implementation of the state's acquired brain injury waiver.

Ms. Amy Messer, Attorney at the Disability Rights Center (the NH P&A)

Ms. Messer focused on the P&As campaign to train medical professionals to write prescriptions so that individuals are more likely to be found eligible for services covered by the state acquired brain disorder waiver.  The training advised doctors to focus their attention on ability to perform daily living skills, intellectual functioning, judgment, behavior, disinhibitions, hygiene, and ability to manage money, ability to monitor medications, physical limitations and needs.  A major theme was to ask doctors to get beyond test data and evaluate needs in the "real world".

Ms. Messer also emphasized that physicians can be extremely helpful in looking at ADA and Olmstead issues. In New Hampshire, they arranged for a physician to complete a tour of facilities where P&A clients reside.  The physician reviewed client records, speak to clients, guardians, and staff members.  The physician than determined the level of treatment or services necessary and estimated the consequences of the absence of community-based care, i.e.- physical deterioration, declining mood, depression, lack of access to peers, increasing passivity or increasing aggression, etc.

Dr Warren Lux, Medical Director, at the Defense and Veterans Brain Injury Center.

Dr. Lux spoke about some of the characteristics and consequences of TBI that might create a need for P&A advocacy.  One such example, was the inadequacies of typical TBI assessment tests. Dr. Lux, explained that even though an individual with TBI may be able to score high on assessment tests, given in a structured environment, these tests often fail to measure these skills in a "real world" context. Dr Lux , suggested that advocates go beyond assessment tests to get a better picture, such as talking to friends and family about the individual's skills prior to the TBI. Dr. Lux also spoke of efforts to accredit ate TBI professionals, by the Brain Injury Association and The Center for Accreditation of Rehabilitation Professionals.

Mr. Kenneth Currier, Director at the TBI Technical Assistance Center

Mr. Currier spoke generally on the various funding options that are used to finance services and supports for individuals with TBI. In addition he mentioned some of the funding issues TBITAC sees as they support State TBI Programs in developing State systems of services and supports.  Most importantly, Mr. Currier encouraged P&As to read the NASHIA Guide to State Government Brain Injury Policies, Funding and Services.  It is a compilation of a 2002 survey of the States that was funded by the Federal TBI Program.  The Guide is available at www.nashia.org. He also encouraged PATBI programs to develop relationships with their state TBI Lead Agency and TBI Advisory Councils.