S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   5063
 
                        2019-2020 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             February 7, 2019
                                ___________
 
 Introduced  by  M.  of  A. RAIA, FINCH, MONTESANO, BLANKENBUSH -- Multi-
   Sponsored by -- M.  of A. BARCLAY, GIGLIO,  HAWLEY,  KOLB,  McDONOUGH,
   MORINELLO -- read once and referred to the Committee on Aging
 
 AN  ACT  to  amend  the  elder law, in relation to creating the New York
   state lifespan respite care program

   THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section  1.  Legislative  intent.  The  legislature  hereby  finds and
 declares that supporting the efforts of families and caregivers who care
 for individuals with special needs at home is efficient, cost  effective
 and  humane.  Families receiving occasional respite care relief are less
 likely to request admission of an individual with special needs to nurs-
 ing homes, foster care or other  out-of-home  care  at  public  expense.
 Respite  care  reduces  family and caregiver stress, enhances family and
 caregiver coping ability and strengthens  family  ability  to  meet  the
 challenging  demands  of  caring  for  individuals  with  special needs.
 Respite care reduces the risk of abuse and neglect  of  senior  citizens
 and  other  vulnerable groups. Coordinated, non-categorical respite care
 services must be available locally to provide reliable short-term relief
 when it is needed by families and caregivers regardless  of  where  they
 live in New York state.
   Therefore,  the legislature finds that a statewide centralized program
 to provide direction, resources and support for  the  establishment  and
 operation of community-based respite care programs would serve a purpose
 beneficial to all the citizens of New York state.
   § 2. The elder law is amended by adding a new section 215-c to read as
 follows:
   §  215-C.  LIFESPAN  RESPITE  CARE.  1.  DEFINITIONS.  AS USED IN THIS
 SECTION, THE FOLLOWING WORDS SHALL HAVE THE FOLLOWING MEANINGS:
   (A) "CAREGIVER" SHALL MEAN AN INDIVIDUAL PROVIDING ONGOING CARE FOR AN
 INDIVIDUAL WITH SPECIAL NEEDS.
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD07951-01-9

 A. 5063                             2
 
   (B) "COMMUNITY LIFESPAN RESPITE CARE PROGRAM" SHALL MEAN  A  NON-CATE-
 GORICAL RESPITE CARE PROGRAM THAT:
   (1)  IS  OPERATED BY COMMUNITY-BASED PRIVATE NON-PROFIT, FOR-PROFIT OR
 PUBLIC AGENCIES THAT PROVIDE RESPITE CARE SERVICES;
   (2) SERVES AN AREA OF ONE OR MORE COUNTIES;
   (3) ACTS AS A SINGLE LOCAL SOURCE OF INFORMATION AND REFERRAL; AND
   (4) FACILITATES ACCESS TO LOCAL RESPITE CARE SERVICES.
   (C) "NEW YORK STATE LIFESPAN RESPITE  CARE  PROGRAM"  SHALL  MEAN  THE
 PROGRAM ESTABLISHED IN THE STATE OFFICE FOR THE AGING PURSUANT TO SUBDI-
 VISION TWO OF THIS SECTION HEREINAFTER REFERRED TO AS "THE PROGRAM".
   (D)  "NON-CATEGORICAL  CARE"  SHALL  MEAN  CARE  WITHOUT REGARD TO THE
 STATUS, INCLUDING BUT NOT LIMITED TO, AGE AND TYPE OF SPECIAL  NEED,  OF
 THE INDIVIDUAL RECEIVING CARE.
   (E) "PROVIDER" SHALL MEAN INDIVIDUAL OR AGENCY SELECTED BY A FAMILY OR
 CAREGIVER TO PROVIDE RESPITE CARE TO AN INDIVIDUAL WITH SPECIAL NEEDS.
   (F)  "RESPITE  CARE"  SHALL MEAN THE PROVISION OF SHORT-TERM RELIEF TO
 PRIMARY CAREGIVERS FROM THE DEMANDS OF ONGOING CARE  FOR  AN  INDIVIDUAL
 WITH SPECIAL NEEDS.
   (G) "RESPITE CARE SERVICES" SHALL INCLUDE:
   (1)  RECRUITING  AND SCREENING OF PAID AND UNPAID RESPITE CARE PROVID-
 ERS;
   (2) IDENTIFYING  LOCAL  TRAINING  RESOURCES  AND  ORGANIZING  TRAINING
 OPPORTUNITIES FOR RESPITE CARE PROVIDERS;
   (3) MATCHING OF FAMILIES AND CAREGIVERS WITH PROVIDERS AND OTHER TYPES
 OF RESPITE CARE;
   (4) LINKING FAMILIES AND CAREGIVERS WITH PAYMENT RESOURCES;
   (5)  IDENTIFYING,  COORDINATING AND DEVELOPING THE COMMUNITY RESOURCES
 FOR RESPITE CARE;
   (6) QUALITY ASSURANCE AND EVALUATION; AND
   (7) ASSISTING FAMILIES AND CAREGIVERS TO IDENTIFY RESPITE  CARE  NEEDS
 AND RESOURCES.
   (H) "SPECIAL NEEDS" INCLUDES:
   (1) ALZHEIMER'S DISEASE AND RELATED DISORDERS;
   (2) DEVELOPMENTAL DISABILITIES;
   (3) PHYSICAL DISABILITIES;
   (4) CHRONIC ILLNESS;
   (5) MENTAL AND EMOTIONAL CONDITIONS THAT REQUIRE SUPERVISION;
   (6) SITUATIONS IN WHICH A HIGH RISK OF ABUSE OR NEGLECT EXISTS; AND
   (7) SUCH OTHER SITUATIONS OR CONDITIONS AS THE OFFICE MAY FROM TIME TO
 TIME ESTABLISH.
   2.  THE  NEW YORK STATE LIFESPAN RESPITE CARE PROGRAM ESTABLISHED. (A)
 THE DIRECTOR IS AUTHORIZED AND DIRECTED TO PROMULGATE  RULES  AND  REGU-
 LATIONS  TO  ESTABLISH  THE NEW YORK STATE LIFESPAN RESPITE CARE PROGRAM
 FOR THE PURPOSE OF DEVELOPING AND ENCOURAGING STATEWIDE COORDINATION  OF
 RESPITE  CARE  AND  TO WORK WITH COMMUNITY-BASED PRIVATE NOT-FOR-PROFIT,
 FOR-PROFIT OR PUBLIC AGENCIES AND INTERESTED CITIZEN  GROUPS  TO  FOSTER
 THE ESTABLISHMENT OF RECOGNIZED COMMUNITY LIFESPAN RESPITE CARE PROGRAMS
 PURSUANT TO SUBDIVISION THREE OF THIS SECTION.
   (B) THE PROGRAM SHALL:
   (1)  PROVIDE POLICY AND PROGRAM DEVELOPMENT SUPPORT, INCLUDING BUT NOT
 LIMITED TO DATA COLLECTION AND OUTCOME MEASURES;
   (2) IDENTIFY AND PROMOTE RESOLUTION OF LOCAL AND  STATE  LEVEL  POLICY
 CONCERNS;
   (3)  PROVIDE  TECHNICAL  ASSISTANCE TO COMMUNITY LIFESPAN RESPITE CARE
 PROGRAMS;
   (4) DEVELOP AND DISTRIBUTE RESPITE CARE INFORMATION;

 A. 5063                             3

   (5) PROMOTE THE EXCHANGE OF INFORMATION AND COORDINATION  AMONG  STATE
 AND LOCAL GOVERNMENT, COMMUNITY LIFESPAN RESPITE CARE PROGRAMS, AGENCIES
 SERVING  INDIVIDUALS WITH SPECIAL NEEDS, FAMILIES AND RESPITE CARE ADVO-
 CATES TO ENCOURAGE EFFICIENT PROVISION OF RESPITE CARE AND REDUCE DUPLI-
 CATION OF EFFORT;
   (6)  ENSURE  STATEWIDE  ACCESS  TO  COMMUNITY  LIFESPAN  RESPITE  CARE
 PROGRAMS, PARTICULARLY IN RURAL AREAS; AND
   (7) MONITOR AND EVALUATE IMPLEMENTATION OF COMMUNITY LIFESPAN  RESPITE
 CARE PROGRAMS.
   (C)  THE  DIRECTOR  SHALL  APPOINT  AN ADVISORY COUNCIL TO THE PROGRAM
 WHICH SHALL BE COMPOSED OF QUALIFIED INDIVIDUALS INCLUDING RESPITE  CARE
 PROVIDERS, RESPITE CARE PROGRAM MANAGERS, RESPITE CARE CONSUMERS, FAMILY
 MEMBERS AND OTHER INTERESTED INDIVIDUALS.
   3. COMMUNITY LIFESPAN RESPITE CARE PROGRAMS. (A) THE DIRECTOR, THROUGH
 THE  PROGRAM  ESTABLISHED  PURSUANT  TO SUBDIVISION TWO OF THIS SECTION,
 SHALL COORDINATE THE ESTABLISHMENT OF COMMUNITY  LIFESPAN  RESPITE  CARE
 PROGRAMS. THE PROGRAM SHALL ACCEPT PROPOSALS TO OPERATE COMMUNITY LIFES-
 PAN  RESPITE CARE PROGRAMS, SUBMITTED IN THE FORM AND MANNER REQUIRED BY
 THE DIRECTOR, FROM COMMUNITY BASED PRIVATE NOT-FOR-PROFIT, FOR-PROFIT OR
 PUBLIC AGENCIES THAT PROVIDE RESPITE CARE SERVICES. ACCORDING TO  CRITE-
 RIA  ESTABLISHED  BY  THE  OFFICE,  THE PROGRAM SHALL DESIGNATE AGENCIES
 DESCRIBED IN THIS SUBDIVISION AS OPERATORS  OF  COMMUNITY  RESPITE  CARE
 PROGRAMS.
   (B) NO LATER THAN THE FIRST OF JANUARY, TWO THOUSAND TWENTY THE OFFICE
 SHALL  DESIGNATE  AT  LEAST  TWELVE  OPERATORS OF COMMUNITY RESPITE CARE
 PROGRAMS STATEWIDE.  NO LATER THAN THE FIRST OF  JANUARY,  TWO  THOUSAND
 TWENTY-ONE THE OFFICE SHALL ENSURE THE DESIGNATION OF AT LEAST ONE OPER-
 ATOR OF COMMUNITY RESPITE CARE PROGRAMS IN EACH COUNTY IN THE STATE.
   (C)  COMMUNITY  LIFESPAN RESPITE CARE PROGRAMS ESTABLISHED PURSUANT TO
 THIS SUBDIVISION SHALL:
   (1) INVOLVE KEY LOCAL INDIVIDUALS AND AGENCIES IN THE COMMUNITY LIFES-
 PAN RESPITE CARE PROGRAM PLANNING PROCESS;
   (2) INCLUDE A FLEXIBLE ARRAY OF RESPITE  CARE  OPTIONS  RESPONSIVE  TO
 FAMILY  AND CAREGIVER NEEDS AND AVAILABLE BEFORE FAMILIES AND CAREGIVERS
 ARE IN A CRISIS SITUATION;
   (3) BE SENSITIVE TO THE  UNIQUE  NEEDS,  STRENGTHS  AND  MULTICULTURAL
 VALUES OF AN INDIVIDUAL, FAMILY OR CAREGIVER;
   (4) OFFER THE MOST EFFICIENT ACCESS TO AN ARRAY OF COORDINATED RESPITE
 CARE  SERVICES  THAT  ARE  BUILT  ON  EXISTING  COMMUNITY  SUPPORTS  AND
 SERVICES;
   (5) BE DRIVEN BY COMMUNITY STRENGTHS, NEEDS AND RESOURCES; AND
   (6) USE A VARIETY OF FUNDS AND RESOURCES, INCLUDING  BUT  NOT  LIMITED
 TO:
   (I) FAMILY OR CAREGIVER FUNDS;
   (II) PRIVATE AND VOLUNTEER RESOURCES;
   (III) PUBLIC FUNDS INCLUDING AVAILABLE FEDERAL MONIES; AND
   (IV) EXCHANGE OF CARE AMONG FAMILIES OR CAREGIVERS;
   (7) CREATE AN ADVISORY COMMITTEE COMPOSED OF FIFTEEN MEMBERS TO ADVISE
 THE  COMMUNITY LIFESPAN RESPITE CARE PROGRAM ON HOW THE PROGRAM MAY BEST
 SERVE THE NEEDS OF FAMILIES AND CAREGIVERS OF INDIVIDUALS  WITH  SPECIAL
 NEEDS.  AT LEAST EIGHT MEMBERS OF SUCH ADVISORY COMMITTEE SHALL BE FAMI-
 LY  MEMBERS  AND  CAREGIVERS  OF INDIVIDUALS WITH SPECIAL NEEDS.   OTHER
 MEMBERS SHALL INCLUDE RESPITE CARE PROVIDERS, REPRESENTATIVES  OF  LOCAL
 SERVICE AGENCIES AND OTHER COMMUNITY REPRESENTATIVES.  COMMITTEE MEMBER-
 SHIP  SHALL  REPRESENT  SENIOR CITIZENS, INDIVIDUALS WITH SPECIAL NEEDS,
 AND FAMILIES AT RISK OF ABUSE OR NEGLECT.

 A. 5063                             4

   4. RULES AND REGULATIONS. THE DIRECTOR IS HEREBY DIRECTED  TO  PROMUL-
 GATE  ANY RULES AND REGULATIONS NECESSARY FOR THE OPERATION AND ADMINIS-
 TRATION OF THE NEW YORK STATE RESPITE CARE PROGRAM ESTABLISHED  PURSUANT
 TO SUBDIVISION TWO OF THIS SECTION, INCLUDING BUT NOT LIMITED TO:
   (A)  ESTABLISHING  CRITERIA, PROCEDURES AND TIME LINES FOR DESIGNATION
 OF THE COMMUNITY BASED PRIVATE  NOT-FOR-PROFIT,  FOR-PROFIT,  OR  PUBLIC
 AGENCIES  THAT  WILL  BE  DESIGNATED AS RECOGNIZED PROVIDERS OF SERVICES
 UNDER COMMUNITY LIFESPAN RESPITE CARE PROGRAMS; AND
   (B) REQUIRING THAT COMMUNITY LIFESPAN RESPITE CARE PROGRAMS  PUBLICIZE
 THE  TELEPHONE  NUMBER  AND  ADDRESS  WHERE  FAMILIES AND CAREGIVERS MAY
 CONTACT THE STATE PROGRAM.
   § 3. This act shall take effect on the one hundred eightieth day after
 it shall have become a law. Effective immediately the  addition,  amend-
 ment and/or repeal of any rule or regulation necessary for the implemen-
 tation  of  this act on its effective date are authorized to be made and
 completed on or before such date.