Florida Senate - 2014                       CS for CS for SB 872
       By the Committees on Appropriations; and Health Policy; and
       Senators Richter and Soto
       576-04581-14                                           2014872c2
    1                        A bill to be entitled                      
    2         An act relating to Alzheimer’s disease; amending s.
    3         252.355, F.S.; requiring the Division of Emergency
    4         Management, in coordination with local emergency
    5         management agencies, to maintain a registry of persons
    6         with special needs; requiring the division to develop
    7         and maintain a special needs shelter registration
    8         program by a specified date; requiring specified
    9         agencies and authorizing specified health care
   10         providers to provide registration information to
   11         special needs clients or their caregivers and to
   12         assist emergency management agencies in registering
   13         persons for special needs shelters; amending s.
   14         381.0303, F.S.; providing additional staffing
   15         requirements for special needs shelters; requiring
   16         special needs shelters to establish designated shelter
   17         areas for persons with Alzheimer’s disease or related
   18         forms of dementia; authorizing the Department of
   19         Health, in coordination with the division, to adopt
   20         rules relating to standards for the special needs
   21         registration program; creating s. 381.82, F.S.;
   22         establishing the Ed and Ethel Moore Alzheimer’s
   23         Disease Research Program within the department;
   24         requiring the program to provide grants and
   25         fellowships for research relating to Alzheimer’s
   26         disease; creating the Alzheimer’s Disease Research
   27         Grant Advisory Board; providing for appointment and
   28         terms of members; providing for organization, duties,
   29         and operating procedures of the board; requiring the
   30         department to provide staff to assist the board in
   31         carrying out its duties; requiring the board to
   32         annually submit recommendations for proposals to be
   33         funded; requiring a report be submitted to the
   34         Governor, Legislature, and State Surgeon General;
   35         exempting certain activities of the board from the
   36         Administrative Procedures Act; authorizing the
   37         department to adopt rules; providing that
   38         implementation of the program is subject to
   39         appropriation; amending s. 430.502, F.S.; updating the
   40         name of the memory disorder clinic established in
   41         Brevard County; requiring the Department of Elderly
   42         Affairs to develop minimum performance standards for
   43         memory disorder clinics to receive base-level annual
   44         funding; requiring the department to provide
   45         incentive-based funding, subject to appropriation, for
   46         certain memory disorder clinics; providing an
   47         effective date.
   49  Be It Enacted by the Legislature of the State of Florida:
   51         Section 1. Section 252.355, Florida Statutes, is amended to
   52  read:
   53         252.355 Registry of persons with special needs; notice;
   54  registration program.—
   55         (1) In order to meet the special needs of persons who would
   56  need assistance during evacuations and sheltering because of
   57  physical, mental, cognitive impairment, or sensory disabilities,
   58  the division, in coordination with each local emergency
   59  management agency in the state, shall maintain a registry of
   60  persons with special needs located within the jurisdiction of
   61  the local agency. The registration shall identify those persons
   62  in need of assistance and plan for resource allocation to meet
   63  those identified needs.
   64         (2) In order to ensure that all persons with special needs
   65  may register, the division shall develop and maintain a special
   66  needs shelter registration program. The registration program
   67  must be developed by January 1, 2015, and fully implemented by
   68  March 1, 2015.
   69         (a) The registration program shall include, at a minimum, a
   70  uniform electronic registration form and a database for
   71  uploading and storing submitted registration forms which may be
   72  accessed by the appropriate local emergency management agency.
   73  The link to the registration form shall be easily accessible on
   74  each local emergency management agency’s website. Upon receipt
   75  of a paper registration form, the local emergency management
   76  agency shall enter the person’s registration information into
   77  the database.
   78         (b) To assist the local emergency management agency in
   79  identifying such persons with special needs, home health
   80  agencies, hospices, nurse registries, home medical equipment
   81  providers, the Department of Children and Families Family
   82  Services, the Department of Health, the Agency for Health Care
   83  Administration, the Department of Education, the Agency for
   84  Persons with Disabilities, the and Department of Elderly
   85  Affairs, and memory disorder clinics shall, and any physician
   86  licensed under chapter 458 or chapter 459 and any pharmacy
   87  licensed under chapter 465 may, annually shall provide
   88  registration information to all of their special needs clients
   89  or their caregivers and to all persons with special needs who
   90  receive services. The division shall develop a brochure that
   91  provides information regarding special needs shelter
   92  registration procedures. The brochure shall be published on the
   93  division’s website. All appropriate agencies and community-based
   94  service providers, including aging and disability resource
   95  centers, memory disorder clinics, home health care providers,
   96  hospices, nurse registries, and home medical equipment providers
   97  shall, and any physician licensed under chapter 458 or chapter
   98  459 may, assist emergency management agencies by annually
   99  registering persons with special needs for special needs
  100  shelters, collecting registration information for persons with
  101  special needs as part of the program intake process, and
  102  establishing programs to educate clients about the registration
  103  process and disaster preparedness safety procedures. A client of
  104  a state-funded or federally funded service program who has a
  105  physical, mental, or cognitive impairment or sensory disability
  106  and who needs assistance in evacuating or while in a shelter
  107  must register as a person with special needs. The registry shall
  108  be updated annually. The registration program shall give persons
  109  with special needs the option of preauthorizing emergency
  110  response personnel to enter their homes during search and rescue
  111  operations if necessary to ensure assure their safety and
  112  welfare following disasters.
  113         (c)(2) The division shall be the designated lead agency
  114  responsible for community education and outreach to the public,
  115  including special needs clients, regarding registration and
  116  special needs shelters and general information regarding shelter
  117  stays.
  118         (d)(4)(a) On or before May 31 of each year, each electric
  119  utility in the state shall annually notify residential customers
  120  in its service area of the availability of the registration
  121  program available through their local emergency management
  122  agency by:
  123         1. An initial notification upon the activation of new
  124  residential service with the electric utility, followed by one
  125  annual notification between January 1 and May 31; or
  126         2. Two separate annual notifications between January 1 and
  127  May 31.
  129  (b) The notification may be made by any available means,
  130  including, but not limited to, written, electronic, or verbal
  131  notification, and may be made concurrently with any other
  132  notification to residential customers required by law or rule.
  133         (3) A person with special needs must be allowed to bring
  134  his or her service animal into a special needs shelter in
  135  accordance with s. 413.08.
  136         (4)(5) All records, data, information, correspondence, and
  137  communications relating to the registration of persons with
  138  special needs as provided in subsection (1) are confidential and
  139  exempt from the provisions of s. 119.07(1), except that such
  140  information shall be available to other emergency response
  141  agencies, as determined by the local emergency management
  142  director. Local law enforcement agencies shall be given complete
  143  shelter roster information upon request.
  144         (6) All appropriate agencies and community-based service
  145  providers, including home health care providers, hospices, nurse
  146  registries, and home medical equipment providers, shall assist
  147  emergency management agencies by collecting registration
  148  information for persons with special needs as part of program
  149  intake processes, establishing programs to increase the
  150  awareness of the registration process, and educating clients
  151  about the procedures that may be necessary for their safety
  152  during disasters. Clients of state or federally funded service
  153  programs with physical, mental, cognitive impairment, or sensory
  154  disabilities who need assistance in evacuating, or when in
  155  shelters, must register as persons with special needs.
  156         Section 2. Present subsections (3) through (7) of section
  157  381.0303, Florida Statutes, are redesignated as subsections (4)
  158  through (8), respectively, paragraph (b) of subsection (2) and
  159  present subsection (6) are amended, and a new subsection (3) is
  160  added to that section, to read:
  161         381.0303 Special needs shelters.—
  163  ASSISTANCE.—If funds have been appropriated to support disaster
  164  coordinator positions in county health departments:
  165         (b) County health departments shall, in conjunction with
  166  the local emergency management agencies, have the lead
  167  responsibility for coordination of the recruitment of health
  168  care practitioners to staff local special needs shelters. County
  169  health departments shall assign their employees to work in
  170  special needs shelters when those employees are needed to
  171  protect the health and safety of persons with special needs.
  172  County governments shall assist the department with nonmedical
  173  staffing and the operation of special needs shelters. The local
  174  health department and emergency management agency shall
  175  coordinate these efforts to ensure appropriate staffing in
  176  special needs shelters, including a staff member who is familiar
  177  with the needs of persons with Alzheimer’s disease.
  179  RELATED FORMS OF DEMENTIA.—All special needs shelters must
  180  establish designated shelter areas for persons with Alzheimer’s
  181  disease or related forms of dementia to enable those persons to
  182  maintain their normal habits and routines to the greatest extent
  183  possible.
  184         (7)(6) RULES.—The department, in coordination with the
  185  Division of Emergency Management, may has the authority to adopt
  186  rules necessary to implement this section. Rules shall include:
  187         (a) The definition of a “person with special needs,”
  188  including eligibility criteria for individuals with physical,
  189  mental, cognitive impairment, or sensory disabilities and the
  190  services a person with special needs can expect to receive in a
  191  special needs shelter.
  192         (b) The process for special needs shelter health care
  193  practitioners and facility reimbursement for services provided
  194  in a disaster.
  195         (c) Guidelines for special needs shelter staffing levels to
  196  provide services.
  197         (d) The definition of and standards for special needs
  198  shelter supplies and equipment, including durable medical
  199  equipment.
  200         (e) Standards for the special needs shelter registration
  201  program process, including all necessary forms and guidelines
  202  for addressing the needs of unregistered persons in need of a
  203  special needs shelter.
  204         (f) Standards for addressing the needs of families where
  205  only one dependent is eligible for admission to a special needs
  206  shelter and the needs of adults with special needs who are
  207  caregivers for individuals without special needs.
  208         (g) The requirement of the county health departments to
  209  seek the participation of hospitals, nursing homes, assisted
  210  living facilities, home health agencies, hospice providers,
  211  nurse registries, home medical equipment providers, dialysis
  212  centers, and other health and medical emergency preparedness
  213  stakeholders in pre-event planning activities.
  214         Section 3. Section 381.82, Florida Statutes, is created to
  215  read:
  216         381.82 Ed and Ethel Moore Alzheimer’s Disease Research
  217  Program.—
  218         (1) There is established the Ed and Ethel Moore Alzheimer’s
  219  Disease Research Program within the Department of Health. The
  220  purpose of the program is to fund research leading to prevention
  221  of or a cure for Alzheimer’s disease. The long-term goals of the
  222  program are to:
  223         (a) Enhance the health of Floridians by researching
  224  improved prevention, diagnosis, treatment, and cure of
  225  Alzheimer’s disease.
  226         (b) Expand the foundation of knowledge relating to the
  227  prevention, diagnosis, treatment, and cure of Alzheimer’s
  228  disease.
  229         (c) Stimulate economic activity in the state in areas
  230  related to Alzheimer’s disease research.
  231         (2)(a) Funds appropriated for the Ed and Ethel Moore
  232  Alzheimer’s Disease Research Program shall be used exclusively
  233  for the award of grants and fellowships through a competitive
  234  process for research relating to the prevention, diagnosis,
  235  treatment, and cure of Alzheimer’s disease and for expenses
  236  incurred in the administration of this section. Priority shall
  237  be granted to research designed to prevent or cure Alzheimer’s
  238  disease.
  239         (b) Applications for Alzheimer’s disease research funding
  240  under the program may be submitted from any university or
  241  established research institute in the state. All qualified
  242  investigators in the state, regardless of institution
  243  affiliation, shall have equal access and opportunity to compete
  244  for research funding. The following types of applications may be
  245  considered for funding:
  246         1. Investigator-initiated research grants.
  247         2. Institutional research grants.
  248         3. Predoctoral and postdoctoral research fellowships.
  249         4. Collaborative research grants, including those that
  250  advance the finding of cures through basic or applied research.
  251         (3) There is created the Alzheimer’s Disease Research Grant
  252  Advisory Board within the Department of Health.
  253         (a) The board shall consist of 11 members appointed by the
  254  State Surgeon General. The board shall be composed of two
  255  gerontologists, two geriatric psychiatrists, two geriatricians,
  256  two neuroscientists, and three neurologists. Initial
  257  appointments to the board shall be made by October 1, 2014. The
  258  board members shall serve 4-year terms, except that, to provide
  259  for staggered terms, five of the initial appointees shall serve
  260  2-year terms and six shall serve 4-year terms. All subsequent
  261  appointments shall be for 4-year terms. The chair of the board
  262  shall be elected from the membership of the board and shall
  263  serve as chair for 2 years. An appointed member may not serve
  264  more than two consecutive terms. Appointed members must have
  265  experience in Alzheimer’s disease or related biomedical
  266  research. The board shall adopt internal organizational
  267  procedures as necessary for its organization. The board shall
  268  establish and follow guidelines for ethical conduct and adhere
  269  to a policy established to avoid conflicts of interest. A member
  270  of the board may not participate in any discussion or decision
  271  of the board or a panel with respect to a research proposal by
  272  any firm, entity, or agency with which the member is associated
  273  as a member of the governing body or as an employee or with
  274  which the member has entered into a contractual arrangement.
  275         (b) The department shall provide such staff, information,
  276  and other assistance as necessary to assist the board in
  277  carrying out its responsibilities. Members of the board shall
  278  serve without compensation and may not receive reimbursement for
  279  per diem or travel expenses.
  280         (c) The board shall advise the State Surgeon General as to
  281  the scope of the research program and shall submit its
  282  recommendations for proposals to be funded to the State Surgeon
  283  General by December 15 of each year. Grants and fellowships
  284  shall be awarded by the State Surgeon General, after
  285  consultation with the board, on the basis of scientific merit.
  286  Other responsibilities of the board may include, but are not
  287  limited to, providing advice on program priorities and emphases;
  288  assisting in the development of appropriate linkages to
  289  nonacademic entities, such as voluntary organizations, health
  290  care delivery institutions, industry, government agencies, and
  291  public officials; and developing and providing oversight
  292  regarding mechanisms for the dissemination of research results.
  293         (4) The board shall submit a fiscal-year progress report on
  294  the programs under its purview to the Governor, the President of
  295  the Senate, the Speaker of the House of Representatives, and the
  296  State Surgeon General by February 15 of each year. The report
  297  must include:
  298         (a) A list of research projects supported by grants or
  299  fellowships awarded under the program.
  300         (b) A list of recipients of program grants or fellowships.
  301         (c) A list of publications in peer-reviewed journals
  302  involving research supported by grants or fellowships awarded
  303  under the program.
  304         (d) The state ranking and total amount of Alzheimer’s
  305  disease research funding allocated to the state from the
  306  National Institutes of Health.
  307         (e) New grants for Alzheimer’s disease research which were
  308  funded based on research supported by grants or fellowships
  309  awarded under the program.
  310         (f) Progress toward programmatic goals, particularly in the
  311  prevention, diagnosis, treatment, and cure of Alzheimer’s
  312  disease.
  313         (g) Recommendations to further the mission of the program.
  314         (5) Activities of the board provided in subsection (3) are
  315  exempt from chapter 120.
  316         (6) The department may adopt rules to implement this
  317  section.
  318         (7) Implementation of the Ed and Ethel Moore Alzheimer’s
  319  Disease Research Program is subject to legislative
  320  appropriation.
  321         Section 4. Present subsections (3) through (9) of section
  322  430.502, Florida Statutes, are redesignated as subsections (6)
  323  through (12), respectively, new subsections (3), (4), and (5)
  324  are added to that section, and present subsections (1), (4),
  325  (5), (8), and (9) of that section are amended, to read:
  326         430.502 Alzheimer’s disease; memory disorder clinics and
  327  day care and respite care programs.—
  328         (1) There is established:
  329         (a) A memory disorder clinic at each of the three medical
  330  schools in this state;
  331         (b) A memory disorder clinic at a major private nonprofit
  332  research-oriented teaching hospital, and may fund a memory
  333  disorder clinic at any of the other affiliated teaching
  334  hospitals;
  335         (c) A memory disorder clinic at the Mayo Clinic in
  336  Jacksonville;
  337         (d) A memory disorder clinic at the West Florida Regional
  338  Medical Center;
  339         (e) A memory disorder clinic operated by Health First The
  340  Memory Disorder Clinic, Inc., operating in Brevard County;
  341         (f) A memory disorder clinic at the Orlando Regional
  342  Healthcare System, Inc.;
  343         (g) A memory disorder center located in a public hospital
  344  that is operated by an independent special hospital taxing
  345  district that governs multiple hospitals and is located in a
  346  county with a population greater than 800,000 persons;
  347         (h) A memory disorder clinic at St. Mary’s Medical Center
  348  in Palm Beach County;
  349         (i) A memory disorder clinic at Tallahassee Memorial
  350  Healthcare;
  351         (j) A memory disorder clinic at Lee Memorial Hospital
  352  created by chapter 63-1552, Laws of Florida, as amended;
  353         (k) A memory disorder clinic at Sarasota Memorial Hospital
  354  in Sarasota County;
  355         (l) A memory disorder clinic at Morton Plant Hospital,
  356  Clearwater, in Pinellas County; and
  357         (m) A memory disorder clinic at Florida Atlantic
  358  University, Boca Raton, in Palm Beach County,
  360  for the purpose of conducting research and training in a
  361  diagnostic and therapeutic setting for persons suffering from
  362  Alzheimer’s disease and related memory disorders. However,
  363  memory disorder clinics funded as of June 30, 1995, shall not
  364  receive decreased funding due solely to subsequent additions of
  365  memory disorder clinics in this subsection.
  366         (3) The department shall develop minimum performance
  367  standards for memory disorder clinics and include those
  368  standards in each memory disorder clinic contract as a condition
  369  for receiving base-level funding. The performance standards must
  370  address, at a minimum, quality of care, comprehensiveness of
  371  services, and access to services.
  372         (4) The department shall develop performance goals that
  373  exceed the minimum performance standards developed under
  374  subsection (3) which must be achieved in order for a memory
  375  disorder clinic to be eligible for incentive funding above the
  376  base level, subject to legislative appropriation. Incentive
  377  funding shall be based on criteria including, but not limited
  378  to:
  379         (a) A significant increase in the volume of clinical
  380  services.
  381         (b) A significant increase in public outreach to low-income
  382  and minority populations.
  383         (c) A significant increase in the acceptance of Medicaid
  384  and commercial insurance policies.
  385         (d) Significant institutional financial commitments.
  386         (5) The department shall measure and score each memory
  387  disorder clinic based on minimum performance standards and
  388  incentive performance goals.
  389         (7)(4) Pursuant to the provisions of s. 287.057, the
  390  department of Elderly Affairs may contract for the provision of
  391  specialized model day care programs in conjunction with the
  392  memory disorder clinics. The purpose of each model day care
  393  program must be to provide service delivery to persons suffering
  394  from Alzheimer’s disease or a related memory disorder and
  395  training for health care and social service personnel in the
  396  care of persons having Alzheimer’s disease or a related memory
  397  disorder disorders.
  398         (8)(5) Pursuant to s. 287.057, the department of Elderly
  399  Affairs shall contract for the provision of respite care. All
  400  funds appropriated for the provision of respite care shall be
  401  distributed annually by the department to each funded county
  402  according to an allocation formula. In developing the formula,
  403  the department shall consider the number and proportion of the
  404  county population of individuals who are 75 years of age and
  405  older. Each respite care program shall be used as a resource for
  406  research and statistical data by the memory disorder clinics
  407  established in this part. In consultation with the memory
  408  disorder clinics, the department shall specify the information
  409  to be provided by the respite care programs for research
  410  purposes.
  411         (11)(8) The department shall implement the waiver program
  412  specified in subsection (10) (7). The agency and the department
  413  shall ensure the selection of that providers who have a history
  414  of successfully serving persons with Alzheimer’s disease are
  415  selected. The department and the agency shall develop
  416  specialized standards for providers and services tailored to
  417  persons in the early, middle, and late stages of Alzheimer’s
  418  disease and designate a level of care determination process and
  419  standard that is most appropriate to this population. The
  420  department and the agency shall include in the waiver services
  421  designed to assist the caregiver in continuing to provide in
  422  home care. The department shall implement this waiver program
  423  subject to a specific appropriation or as provided in the
  424  General Appropriations Act.
  425         (12)(9) Authority to continue the waiver program specified
  426  in subsection (10) (7) shall be automatically eliminated at the
  427  close of the 2010 Regular Session of the Legislature unless
  428  further legislative action is taken to continue it before prior
  429  to such time.
  430         Section 5. This act shall take effect July 1, 2014.