The3rd meeting of the Subcommittee on Families and Children of the Interim Joint Committee on Health and Welfare was held on Wednesday, October 15, 2008, at 10:00 AM, in Room 129 of the Capitol Annex. Representative Tom Burch, Chair, called the meeting to order, and the secretary called the roll.
Members:Senator Katie Stine, Co-Chair; Representative Tom Burch, Co-Chair; Senators Charlie Borders, Tom Buford, Perry B. Clark, and Johnny Ray Turner; Representatives Scott W. Brinkman and James R. Comer, Jr.
Guests:† Rebecca Grau, Interim Director, and Tina Bernstein, Kentucky Autism Training Center, University of Louisville; Anne Swinford, Commission for Children with Special Health Care Needs; Dr. Joseph Hersh, Director, STAR Program, and Professor of Pediatrics, University of Louisville; and Heidi Schissler.
LRC Staff:† Ben Payne, Jonathan Scott, and Marlene Rutherford.
The minutes of the September 5, 2008 meeting were approved without objection.†
First on the agenda was the discussion of a neurological disorder called Apraxia, also known as DAS.† Christine Gedling, along with her daughter Lara, a child with Apraxia, and their family members, Tina Radford and Leslie Beam testified on the issue.† Appraxia is a severe communication disorder that results from dysfunction of the cerebral hemispheres of the brain and is characterized by the loss of ability to carry out skilled movements and gestures, such as speaking properly.† The guests had first-hand knowledge and exposure to this disorder in their family and wanted to make the committee aware of the disorder in children and the need to address it early.† They said that children with this disorder would benefit from intensive speech and language therapy from pre-school through first grade.† They also stated that a speech pathologist is helpful; however they are not trained to deal with Apraxic children.† It is difficult to determine the number of children affected by this disorder because it is included in the category of speech and language disabilities.† Some medical professionals do not recognize Apraxia as a disability but the diagnosis of this disability is made by a neurologist.†
Senator Buford asked how many children in Kentucky have Apraxia.† Ms. Gedling did not know the number affected in Kentucky; however she was aware of ten children in Louisville who not only have Apraxia diagnosed by a neurologist, but may have another disability as well.† Senator Buford also asked for recommendations on what could be done to address this issue.† Ms. Gedling indicated early intervention, beginning at least at three years of age.† Senator Buford also asked how children with this disorder could be identified if parents do not come forward.† Ms. Gedling said the media would be a good source or if funding for the program was available, parents would not have to use the school system to identify the disorder.† Senator Buford suggested that the family meet with Dr. Sheldan Berman, Superintendent of the Jefferson County Schools, to develop a plan that could be recommended to assistant in identifying children with this disorder to get them in the proper programs.† Senator Buford suggested that staff send a letter to Dr. Berman encouraging a meeting to talk with Ms. Radford, Ms. Beam, and Ms. Gelding of recommendations to present to the General Assembly.†
Next on the agenda was Rebecca Grau, Interim Director of the Kentucky Autism Training Center.† She gave an overview of the School-Based Training and Technical Assistance Services.† The Center is a special education cooperative that provides direct consultation and coaching to a team of educators to address specific needs of students with autism.† This includes training on creating a structured environment for the student, curriculum modification, promoting communication, and addressing behavior issues.† The Center pointed out the need to address the training needs of the different professionals that work with autistic children in a more systematic way.† The Center began working with the Department of Education and other universities on how to be more systematic in working with these special needs children.† In the process of investigating how the Center could serve those individuals more effectively, they were invited to submit an application to partner with the National Professional Development Center on Autism Spectrum Disorders.† These schools are studying technical assistance and conducting research on how to build a state-wide system of technical assistance for educators.† The National Center was impressed with the stateís special education cooperative system.† They will help the Kentucky Autism Training Center set up model classrooms across diverse settings and implementing research and studies that indicate that teachers need direct coaching.†
Senator Buford asked if the Center has an office at the University of Kentucky or other centralized area so individuals can seek the Centerís assistance.† Ms. Grau said that the Center is housed at the University of Louisville but travels statewide.† She said the Center meets directly with parents in a public setting.† Ms. Grau did state that an on-line database has been created that is voluntary for providers to be listed which would help facilitate parents.† This list currently has over 300 providers.†
Senator Stine inquired about the number of autistic children in Northern Kentucky and what services are provided for training in that area.† Ms. Grau said there are approximately 26,000.†
Representative Brinkman pointed out that the Kentucky Commission on Autism Spectrum Disorders recognized that autism affects all 120 counties.† The Commission is trying to create an Office of Autism within the Kentucky Department of Education because it is important for parents throughout the Commonwealth to have the ability to contact the cabinet and have someone in the cabinet who is focused strictly on autism to help them understand what services are available in their region.† He noted that there is already a lot of structure in place such as the Comprehensive Care Centers, the Education Cooperatives, and the universities; however there is not much coordination with the Kentucky Department of Education and the Cabinet for Health and Family Services.†
Senator Clark asked what was occurring with the adult autism population.† Ms. Grau indicated that there were no services for the aging autism individual, although the need for core services carries throughout their lifetime.† She pointed out that the Center is working with the University of Louisville Pediatric Department to develop a family guide for autism that will outline different services, and provide strategies in the home on dealing with autism.†
Representative Burch said it is important to get the message out into the communities about autism and what is being done.†
Next, the subcommittee heard testimony from Dr. Joseph Hersh, Director of the Weisskopf Child Evaluation Center (WCEC), Professor of Pediatrics at the University of Louisville, and Director of Systematic Treatment of Autism and Related Disorders (STAR).†
At the outset Dr. Hersh commented on childhood Apraxia speech.† He said that WCEC has a diverse role in addressing the needs of children that have developmental disorders and it has a close partnership with Dr. Steve Davis and Dr. Ruth Ann Shepherd, of the Kentucky Department for Public Health.† In recent years when modifications were made within the First Steps Program, a ceiling was placed on the number of services a child could receive if he or she qualified based on established risk or on scores on standardized tests.† One of the concerns at that time was if there was a child diagnosed with autism at the age of two or a child diagnosed with Apraxia speech at two or two-half years of age.† A service exception program was created. †The WCEC is actively involved with that program, working closely with Dr. Shepherdís group.† With greater awareness by speech and language pathologists of a diagnosis or being referred for intense evaluation at the WCEC to help establish that diagnosis, the child has the potential to access much greater, intensive services at a very young age.† The American Academy of Pediatrics has recommended that simple screenings be completed by parents at eighteen months of age at a regular office visit and a repeat screening at twenty-four months of age.†
Dr. Hersh also said the Weisskoph Child Evaluation Center was established to help children who have special needs realize their full potential.† The Center has a comprehensive, developmental program and other programs for children that have genetic disorders and birth defects.† The primary funding for the Center comes from the Department for Public Health, Division of Adult and Child Health Improvement, Maternal and Child Health Branch.† It has been strongly supported for the past 40 years by the WHAS Crusade for Children.† Since the creation of the program in 1966, the number of children diagnosed with autism spectrum disorders has increased dramatically.†
One of the challenges of the WCEC following a diagnosis is the limited resources for intervention.† Dr. Hersh indicated that he had been approached by families and others regarding the necessity for creating an autism treatment program that is comprehensive in nature and could address the cognitive, social, educational, behavioral, and communication needs of a child with that diagnosis.† In 2002, the WHAS Crusade for Children was approached about start-up funds for creating the STAR Program and the WCBC did receive a grant from them that enabled it to hire a small number of professionals who could develop a program and provide intervention services.† The mission of the program was to empower families by sharing knowledge and enhancing skills of the child.† The focus was to develop an individualized program, looking at the childís needs and use a variety of evidence-based treatments, such as applied behavioral analysis, and incorporate that with the familiesí priorities.† One of the key goals in research was to look at treatment approaches and outcomes to determine what worked best for a child with a specific characteristic.† STARís focus is on behavior management and a biomedical program that evaluates medical issues that families with an autistic child may have.† It also evaluates the efficacy of alternative and complementary medicine approaches.† Currently they are recruiting families to start a double blind study, looking at an antioxidant that may help the childís behavior and allow them to function in everyday settings.†
STAR also has an early childhood program that helps families and pre-school programs to maximize programming and strategies for that child.† Working with families, they provide occupational therapy services and consultations in schools to address clinical concerns about the child.† They will be partnering with the Kentucky Autism Training Center (KATC) to provide a more comprehensive training and treatment program.† STAR also addresses the social skills needs of the child.†† Since 2002 STAR has served over 400 children in 50 counties in Kentucky as well as other states.† It is a goal of STAR to create a network or satellite system that involves both universities and community agencies to provide quality diagnosis and some direct treatment and training for professionals in those communities to upgrade the services for diagnosis of the child.†
The University of Louisville Autism Center developed a partnership with the Departments of Pediatrics (WCEC and STAR), Psychiatry in the School of Medicine (Bingham Clinic) and the College of Education and Human Development (KATC and Department of Teaching and Learning) to provide a more comprehensive program.† The goal is to become the primary resource for state-of-the-art assessment and treatment of autism; to provide cutting edge research, training, and support for families; and education and training of professionals from a number of healthcare and educational disciplines throughout the state which results in the residents of the state having a single source for providing evidence based diagnosis and intervention and have the ability to access the information from research.† One of the benefits, as seen by Dr. Hersh, in working with the various partners, is the potential of combining the clinical service role with the training and technical assistance role provided by KATC to provide a more comprehensive approach statewide.†
Representative Burch asked how Kentucky compares with other states in terms of what is being done for autism.† Dr. Hersh indicated Kentucky is moving in the right direction because the state is enhancing its ability to diagnose children at a younger age.† There are other states that are providing more enhanced services.
Next, the committee heard from Rebecca Cecil, Executive Director, Commission for Children with Special Health Care Needs.† She said that the Commission has thirteen regional offices throughout the state.† It was founded in 1924 and provides care for children with physical disabilities.† Its mission is to enhance the quality of life for children with special needs through direct service, leadership, education, and collaboration.† There are various clinical programs and services offered by the Commission.† Over 8,000 children are treated in their clinics.† As a result of legislation passed in 2000, she said that 98 percent of all children leaving the hospital have had a hearing screening.† The Commission collects that data to determine how many children are at risk for a hearing disorder.†† She discussed the Commissionís relationship with the Department for Community Based Services (DCBS).† She indicated that a pilot program was conducted with DCBS and identified 130-150 children deemed to be medically fragile.† She said there had been 1,010 home visits. †
Senator Borders asked why the percentage of children being born and tested prior to leaving the hospital was not 100 percent.† Ms. Cecil indicated that due to the way the legislation was written, hospitals that have over 40 births per year are required to report.† There was not a requirement that mandates that at-risk children be reported.†
Ms. Cecil also discussed drug costs.† The Commission is working to deal with drug interactions from various drugs a patient may be on as well as mail order drugs.† The Commission is utilizing many of the strategies used in the private sector to deal with escalating healthcare costs.†
Dr. Kraig E. Humbaugh, M.P.H., State Epidemiologist and Department of the Division of Epidemiology and Health Planning in the Department for Public Health, Cabinet for Health and Family Services, discussed childhood infectious diseases in Kentucky.† He said that infectious diseases are reported to local and state public health departments by clinicians, hospitals, and laboratories across the state.† Due to limited resources, infectious disease reporting is confined to public health significance.† There are three criteria used to determine whether diseases are reportable.† †Some diseases meet all three of the criteria.† Depending on the disease, some are reportable within twenty-four hours, others within a few days.† He said that Salmonella and Shigellosis show an upward trend because they are on the rise in childcare settings.† The number one strategy in preventing infectious disease is through immunization.† Other strategies are promoting healthy behaviors and discouraging risky behaviors.†
Senator Stine asked what the incidence of tuberculosis in Kentucky has been and if there is a resurgence of that disease.† Dr. Humbaugh indicated there are more cases being reported than in the past.† Two years ago there were only eighty seven active cases of tuberculosis in Kentucky, but there were over one hundred last year. †Senator Stine also asked whether it was a good decision to not have routine tuberculosis testing of all students in schools.† Dr. Humbaugh felt that it was a good idea.
He said that seasonal influenza vaccination can be given September through May.† New recommendations this flu season expand the vaccination to children ages six months to eighteen years.† He said that between 10 and 25 percent of the school children in Kentucky are vaccinated against influenza.†
The meeting adjourned at 12:05 p.m.