Call to Order and Roll Call
The7th meeting of the Interim Joint Committee on Health and Welfare was held on Wednesday, December 15, 2010, at 10:00 AM, in Room 129 of the Capitol Annex. Senator Julie Denton, Chair, called the meeting to order at 10:00 AM, and the secretary called the roll.
Members:Senator Julie Denton, Co-Chair; Representative Tom Burch, Co-Chair; Senators Tom Buford, Julian M. Carroll, Perry B. Clark, Denise Harper Angel, Alice Forgy Kerr, Joey Pendleton, Katie Kratz Stine, and Jack Westwood; Representatives Bob M. DeWeese, Jim Glenn, Brent Housman, Joni L. Jenkins, Mary Lou Marzian, Darryl T. Owens, Susan Westrom, and Addia Wuchner.
Guests: Marsha Hockensmith, Executive Director, Protection and Advocacy; April DuVal, Executive Director, The Council on Developmental Disabilities; Carol Mueller, President, Bingham ICF/MR Family Group; Mark Hogg, Executive Director, and Jeff Klingeman, Board of Directors, Edge Outreach; Terry Bunn, Ph.D., Assistant Professor and Director, Kentucky Injury Prevention and Research Center; Dr. Stephen Hall, Commissioner, and Dr. Allen Brenzel, Clinical Director, Department for Behavioral Health, Developmental and Intellectual Disabilities, Cabinet for Health and Family Services; Charlotte Beason and Nathan Goldman, Kentucky Board of Nursing; Patty Dempsey, The Arc of Kentucky; Eric T. Clark, Greg Wells, Janet Justice, Kentucky Association of Health Care Facilities; Marty White and Bill Doll, Kentucky Medical Association; Jodi Mitchell, Kentucky Voices for Health; Sarah S. Nicholson, Kentucky Hospital Association, and Anne Joseph, Kentucky Task Force on Hunger.
Approval of Minutes
A motion to approve the minutes of the November 17, 2010 was made by Senator Pendleton, seconded by Representative Carroll, and approved by voice vote.
Mortality Review System
Marsha Hockensmith, Executive Director, Protection and Advocacy, stated that the need for mortality reviews, including autopsies, is important, particularly for persons with disabilities. The Kentucky Protection and Advocacy Death Investigation Group (DIG) review the records of 55 deaths that occurred at state-owned and operated facilities during a two-year period from October 1998 through October 2000. The following results were found: 1) if circumstances of an individual’s death involved dramatic facts, such as being scalded in a bathtub of water or overdosing with medication, the death was scrutinized; 2) conditions such as poly-pharmacy, overuse or improper use of seclusion or restraints, lack of staff familiarity with an individual’s history or risk factors and poorly trained or inattentive staff frequently did not trigger increased scrutiny of facility deaths; 3) there was no central registry of deaths at the state level; 4) there was no uniform instrument used for reporting deaths; 5) reporting to any authority outside the facility was sporadic and not required by the Department for Behavioral Health, Developmental and Intellectual Disabilities, the department responsible for the operation of the facilities; 6) facilities were left to their own devices in conducting such reviews and in some facilities nothing more than a chart entry was made. In many facilities, an in-house committee convened to review the circumstances of an individual’s death, but the results were not collected at the state level; 7) state guardianship rarely, if ever, requested an autopsy. Coroners are hesitant to request an autopsy and often coroners’ offices are not involved as the facility doctors may sign the death certificate. As the result of DIG and subsequent monitoring of other deaths, Protection and Advocacy concluded that a formal review system of deaths in state-owned and operated facilities needed to be created, and autopsies of state wards needed to be re-examined.
The State Mortality Review Committee within the Department for Behavioral Health, Developmental and Intellectual Disabilities, is charged with reviewing all deaths in state-owned and operated facilities. State owned and operated facilities include Western State Nursing Facility, Glasgow State Nursing Facility, Oakwood, Outwood, Hazelwood, Central State, Appalachian Regional Hospital, Eastern State Hospital, Central State Hospital, and Western State Hospital. The Mortality Advisory Committee within the Department for Behavioral Health, Developmental and Intellectual Disabilities was created and charged to meet quarterly to review summary findings of the Mortality Review Committee including cause of death and indications for systemic change, and present the findings to the Kentucky Commission on Services and Support for Individuals with Mental Illness, Alcohol and Other Drug Abuse Disorders, and Dual Diagnoses (HB 843) and the Commission on Services and Supports for Individuals with Mental Retardation and Developmental Disabilities (HB 144) for system and legislative change recommendations.
When an out-of-hospital death occurs, there are certain types of cases where an autopsy is required. However, for many cases, it is up to family members to request an autopsy. Autopsies are performed by medical examiners, and the cost to the referring county is the transport of the body to and from the autopsy site. Autopsies are important for persons with disabilities because premature death due to aspiration pneumonia and other respiratory illnesses are much higher; and they allow the healthcare system to learn and become more efficient in delivering appropriate, better quality of care. Persons with mental illness have a shorter life span and receive less medical care and supports. Often, there is no family involvement and or no one to request an autopsy of persons with disabilities or for clients of state guardianship.
Deaths in state-owned and operated Personal Care Homes need to be reviewed by the Mortality Review Committee. The committee needs to submit regular reports to the Mortality Advisory Committee and at the HB 843 and HB 144 Commission meetings. There are no specific timelines in place for state-owned and operated facilities and publically-funded community programs to notify the cabinet of deaths which causes significant delays before the Mortality Review Committee conducts its review. While an autopsy may not be needed in many cases, there are clearly circumstances when completion of one is necessary. Autopsies should be required for all unexpected or unexplained deaths, for persons with disabilities, for clients of state guardianship, and for anyone who receives publicly-funded supports and services.
In response to a question by Senator Denton and Representative Owens, Ms. Hockensmith stated that KRS 72.460 states “The cost of autopsies shall be paid for by the fiscal court; provided, however, that the Justice and Public Safety Cabinet, Office of the Kentucky State Medical Examiner, may contract with pathologists and toxicologists and chemists and pay for such autopsies within the budgetary limitations of funds appropriated by the General Assembly for this purpose.” KRS 72.435 states “In the event it is necessary for the coroner to order a body to be transported or exhumed, payment shall be made by the fiscal court, consolidated local government, or urban-county government, whichever is appropriate, upon certification by the coroner that the services were rendered.”
Dr. Stephen Hall, Commissioner, Department for Behavioral Health, Developmental and Intellectual Disabilities, Cabinet for Health and Family Service, stated that an autopsy is not asked for in every case, because medical science is at a place now that before a person dies, the cause is known. If something unusual or unexpected happens, the information an autopsy would provide is needed to make or change policy decisions.
In response to questions by Representative Burch, Dr. Allen Brenzel, Clinical Director, Department for Behavioral Health, Developmental and Intellectual Disabilities, Cabinet for Health and Family Services, stated that each of the state-owned facilities has its own incident investigation team who notifies the Office of Inspector General, the coroner, and the department. The department obtains the records from internal and external reviews, any autopsy that has been performed, and conducts an external review with a consulting physician. The department oversees the Supports for Community Living (SLC) program and certifies and investigates the SLC providers. In 2007, the Mortality Review Committee started to review deaths of individuals with developmental and intellectual disabilities who receive SLC services, state general fund services, Michelle P. waiver services, or Money Follows the Person services. There is a five percent autopsy rate in state facilities and lower in community deaths. The decrease in autopsies follows the national trend. One reason for the decline is the expense. If the death is considered a natural progression of a known illness, an autopsy is not usually performed. Most autopsies performed today are for forensic purposes. An autopsy is not performed unless there are extenuating reasons. Commissioner Hall stated people with significant disabilities should have the same access to autopsies as is ordinary or customary for people without disabilities
Transparency in the Mortality Review System and Adult Abuse Registry/Background Check
April DuVal, Executive Director, The Council on Developmental Disabilities, stated that in response to the growing concern over protection and transparency, the Task Force on Protection and Transparency was established in early 2010 by the Board of Trustees of the Council on Developmental Disabilities. The Task Force met over a period of five months to review, discuss, and discern recommendations that are intended to protect persons with intellectual and developmental disabilities living in state-funded residential programs within the Commonwealth of Kentucky. The recommendations require an increased level of governmental transparency in order to insure the safety and well being of its citizens with disabilities. The recommendations are: 1) the Governor must implement policies and practices that reflect a culture of transparency within state government, intellectual and developmental disability programs in particular; 2) establish an adult abuse registry to assure that individuals with intellectual and developmental disabilities served with the state-funded adult service system are protected from neglect and abuse by persons already identified as abusers; 3) enact Deron’s Law which protects residents of ICF/ MR/DD residential facilities from abuse and neglect by their caregivers; 4) reactivate the HB 144 Commission mandated Mortality Review Committee within the Department for Behavioral Health and Developmental and Intellectual Disabilities that would review individually all deaths occurring in state-funded residential settings for persons with intellectual and developmental disabilities; 5) enact legislation to require selective autopsies based on key indicators for persons with intellectual and developmental disabilities that die in state-funded residential placements; 6) establish a robust family and client-based monitoring system of state-funded residential services which reflects national best practice standards and guidelines and report to an independent entity; 7) enact legislation to establish an independent Ombudsman Office to represent the needs of consumers with intellectual and developmental disabilities who are served in state-funded residential settings and their families and guardians; and 8) establish an Independent Fatality Review Committee to evaluate causes and factors contributing to deaths, identifying patterns and systemic problems, ensure consistency of review process, and make recommendations to the Governor to prevent avoidable deaths and improve the quality of care for individuals with intellectual and developmental disabilities living in state-funded residential programs.
There is federal support within the Patient Protection and Affordable Care Act in Section 6201, nationwide program for national and state background checks on direct patient access employees of long-term care facilities and providers. The cabinet has applied for a federal grant for participation in the national project. A 3 to 1 match rate, Kentucky would receive approximately $3 million. Specified long-term care providers would be required to obtain state and national criminal history and other background checks on prospective employees. To conduct the checks, states will utilize a search of state-based abuse and neglect registries and specified state and federal databases and records, including fingerprint checks. A vital key element in the system is the state-based abuse and neglect registry. Although Kentucky has a registry for children, there is not one for adults.
Carol Mueller, President, Bingham ICF/MR Family Group, told about situations where her sister, Donna, had suffered abuse at the hands of her caregivers. People with no family advocates are especially vulnerable. The law prioritizes the system not the people involved. Abusers are moving from place to place and continuing to abuse. The system is allowing the abuse of people who cannot talk, who function as infants and children, who cannot move, are hurt or killed to be covered up. The most vulnerable adults are being placed in the middle of danger with little or no monitoring. They are as disrespected in death as in life, with little likelihood of autopsies, inquiries, or investigations regardless of circumstances when their lives end. After 30 years, a culture that will no longer tolerate child abuse is tolerating abuse for adults with developmental disabilities. The question that needs to be asked is do the lives of adults with developmental disabilities have value or not.
Neglect and Abuse of Children: Trends
Pat Wilson, Commissioner, Department for Community Based Services, Cabinet for Health and Family Services, stated that Federal legislation provides a foundation for States by identifying a minimum set of acts or behaviors that define child abuse and neglect. The Federal Child Abuse Prevention and Treatment Act (CAPTA) (42 U.S.C.A. §5106g), as amended by the Keeping Children and Families Safe Act of 2003, defines child abuse and neglect as, at minimum: Any recent act or failure to act on the part of a parent or caretaker which results in death, serious physical or emotional harm, sexual abuse or exploitation; or an act or failure to act which presents an imminent risk of serious harm. This definition of child abuse and neglect refers specifically to parents and other caregivers. A "child" under this definition generally means a person who is under the age of 18 or who is not an emancipated minor. With respect to what constitutes abuse and neglect as well as who is considered a caregiver, Kentucky’s definitions are more inclusive than most other states. On June 15, 2001, the cabinet began a Multiple Response System of child abuse and neglect. In Kentucky, 75 percent of the substantiated investigations are because of neglect; 58 percent for substance abuse; 42.7 percent for mental health issues; 65.1 percent for domestic violence; 75.7 percent for income issues; and 75.2 percent for two or more risk factors. A poor state has a higher rate of neglect. Drug treatment needs more funding and changes to public policy. The cabinet has found there are not enough affordable drug treatment programs for parents.
Any child who dies as a result of abuse and neglect is a horrendous tragedy. Changes in the cabinet’s protocol will take effect in January. One of the changes includes talking to more people, besides family members, who have knowledge and pertinent information about the child. Another change is to ensure that social workers are not spending time on duplicate meetings or paperwork. In child fatality cases, 71 percent were 4 years or younger; 60 percent were male; 40 percent were female; and 80 percent were Caucasian. In 2007, Kentucky ranked first in the country in the number of child fatalities, and nineteenth in 2008.
In response to a question by Representative Wuchner, Commissioner Wilson stated that the reviews of fatalities are for all children where there is suspected of abuse or neglect. A routine review is conducted on children that are involved in open cases that the department maintains, whether in their own home or in foster care. If children are in a relative placement that the cabinet supervises, they are seen monthly. If a relative obtains permanent custody of the child and there are no reports of abuse or neglect, the department will close the family’s case.
In response to a question by Senator Stine, Commissioner Wilson stated that a review process has been instituted of cases of children who are in the cabinet’s care where everyone involved in the case talks about what preceded that child coming into care, why that child is in care, what is going on with the family, what permanent plans are being made for the child, and where to go from there. A structure is being built that promotes these discussions at the local level, between the worker and supervisor.
In response to questions by Senator Denton, Representative Owens, and Representative Jenkins, Commissioner Wilson stated that currently there are over 1,500 frontline workers and 260 frontline supervisors. Kentucky’s caseloads are higher than the national average, partly in due to the bad economy. The department tries not to impose additional requirements on frontline workers, but some have come directly from the federal government. Suggestions from frontline workers are needed to streamline the process and there are no duplicative requirements. The department has been accredited by the Council on Accreditation. The standards put forth by the Child Welfare League of America talk about an average of 12 investigations per worker, and an average caseload of 15 to 17 on-going cases. Each social worker has 18 to 19 investigations and on-going cases combined. Statutory language sets the threshold at 25 caseloads for DCBS frontline staff. Resources in the community are not as readily available that provide supportive services to families and in turn support the staff. There are not as many opportunities to refer families to in-home services, to counseling, to help with supervised visits. The amount of available resources does affect progress. The department tries to maintain a ratio of one supervisor to every eight workers. Normally, frontline supervisors do not routinely take cases. The department tries to maintain the one to eight ratio of frontline supervisors to frontline social workers for its accreditation.
Clean Water Strategies
Mark Hogg, Executive Director, EDGE Outreach, stated that EDGE Outreach is a dynamic non-profit organization whose mission is to provide safe, reliable water to improve the health and welfare of communities in developing countries. EDGE promotes a unique approach to generating clean and sustainable supplies of clean water for small communities. The tools and training developed offer dramatic, life-saving improvements under difficult circumstances, whether working in communities struggling to satisfy their day-to-day needs or working in acute disaster relief situations. EDGE seeks to empower local partners, not just serve clients. Portable, inexpensive, highly efficient water purification systems are installed based on simple chlorine generators that run on a 12-volt battery and salt. The by-products manufactured in the water purification process can be used to disinfect medical equipment and kill mosquito larvae, reducing the risk of death from unsanitary conditions and malaria. Volunteers are sent all over the world, including post-disaster first responders. Local people are trained in proper health and hygiene so they can protect their new source of water with proper sanitation practices. Volunteers are trained to install purifiers, fix pumps, disseminate crucial health and hygiene information, and train others to do the same. The United States Southern Command invited EDGE to provide training to their disaster-relief personnel and to supply EDGE trainers to join its personnel on the USS Iowa Jima on missions. The latest project involves the design of an efficient mini-water treatment plant coupled with a unique conversion kit that enables a hand-pump to force water above its own level through one of the treatment systems and directly into storage. A new product for transporting water is under development. Operations and product development are financed through private contributions and the support of generous benefactors.
In response to questions by Representative Glenn, Mr. Hogg stated that EDGE Outreach that is a non-profit organization whose mission is to provide safe, reliable water to improve the health and welfare of communities in developing countries. It does not receive any state or federal funds.
In response to a question by Senator Westwood, Mr. Hogg stated that he is open to discussions with any legislator on legislative suggestions that would help EDGE.
Consideration of Referred Administrative Regulations
The following administrative regulations were referred to the committee for consideration: 201 KAR 7:075 – establishes a continuing education program for licensed hearing instrument specialists, setting forth the basic requirements, methods of accreditation, and manner of report; 201 KAR 17:030 – establishes the required fees and the requirements for inactive status of a speech-language pathologist, speech-language pathology assistant, or audiologist; 201 KAR 20:056 – establishes advanced practice registered nurse (APRN) licensure, program requirements, and recognition of a national certifying organization; 201 KAR 20:061 – establishes standards for the doctor of nursing (DNP) degree; 201 KAR 20:062 – establishes advanced practice registered nurse (ARNP) programs of nursing standards; 201 KAR 22:070 – establishes the requirements a foreign-educated physical therapist shall satisfy to become credentialed in the state of Kentucky; 201 KAR 28:010 – sets forth the definition of terms and phrases which will be used by the Board of Licensure for Occupation Therapy in enforcing and interpreting the provisions of Chapter 319A and the administrative regulations; 201 KAR 28:130 – establishes the requirements of appropriate supervision for persons who are delivering occupational therapy services, the documentation required in supervision, and the process for reviewing the supervision process; 201 KAR 36:060 – establishes the requirements relating to supervision and the requirements for experience under supervision of a student intern or trainee in professional counseling; 900 KAR 7:030 – establishes the required data elements, forms, and timetables for submission of data to the Cabinet for Health and Family Services and fines for noncompliance from specified health care providers; and 902 KAR 2:060 - establishes the mandatory immunization schedule for attendance at child day care centers, certified family child care homes, other licensed facilities which care for children, preschool programs, and public and private primary and secondary schools.
There being no further business, the meeting was adjourned at 12:12 p.m.