Assembly Bill A9483

                            
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                  9483

                          I N  A S S E M B L Y

                             March 10, 2016
                               ___________

Introduced  by M. of A. GUNTHER -- read once and referred to the Commit-
  tee on Mental Health

AN ACT to amend the public health law, in relation to enacting the "fair
  access to individualized residences (FAIR) act"

  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 that many
parents and family members of  developmentally  disabled  children  have
cared  for  their  loved  ones  for decades and now many of these family
caregivers are elderly with their own age related disabilities. Increas-
ingly, they can no longer manage the challenge of caring  for  an  adult
child  who  may  have significant and challenging emotional and physical
needs. In fact, estimates are that approximately 25% of  developmentally
disabled  New  Yorkers,  or  approximately 50,000 individuals, live with
family caregivers who are over the age of 60.  Many of these adult chil-
dren need or will soon need  out  of  home  residential  placements  for
living  situations  which are increasingly untenable. This situation has
reached crisis proportions. Complicating matters is the fact that  there
is  a  shortage  of residential placements and the process for providing
those placements to those most in need is not transparent, consistent or
uniform across the state. Residential  placements  are  not  necessarily
allocated  based on need. Nor does such allocation take into account the
viability of an individual's current residential situation or any recog-
nition of the long-standing contribution and sacrifice family caregivers
have made caring for their loved ones at home at considerable savings to
the state. Instead, placements are often allocated based on an  individ-
ual's  designation  as  a member of a particular class or "special popu-
lation" of people with developmental disabilities.
  Therefore, the state must develop and implement  a  clear,  consistent
and  uniform  policy for ensuring that placements go to individuals most
in need. This must include recognition of the viability of  an  individ-
ual's  living situation with a family caregiver as well as the sacrifice
that many of these caregivers have made for years or even decades. Fami-
lies must regain the confidence that the means will exist so that  their

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
              

                                                           LBD14046-03-6

A. 9483                             2

children will receive care even when they can no longer provide it.  The
legislature  finds  that  the  adoption of this act is an important step
toward making this commitment a reality.
  S  2.  Short  title.  This  act shall be known and may be cited as the
"fair access to individualized residences (FAIR) act".
  S 3. The public health law is amended by adding a new section 207-a to
read as follows:
  S 207-A. PRIORITY PLACEMENT PROCESS FOR CERTAIN DEVELOPMENTALLY  DISA-
BLED  PERSONS.  THE  COMMISSIONER  AND THE COMMISSIONER OF DEVELOPMENTAL
DISABILITIES SHALL, IN COOPERATION WITH  INTERESTED  PARTIES  INCLUDING,
BUT  NOT LIMITED TO, FAMILY MEMBERS, SELF-ADVOCATES, PROVIDERS AND STATE
OFFICIALS, DEVELOP A STATEWIDE,  UNIFORM  AND  TRANSPARENT  PROCESS  FOR
ASSIGNING OUT OF HOME RESIDENTIAL PLACEMENTS OF DEVELOPMENTALLY DISABLED
PERSONS  ON  A  PRIORITY  BASIS. THE PROCESS SHALL INCLUDE THE FOLLOWING
CRITERIA:
  1. THE EXTENT OF AN INDIVIDUAL'S DISABILITY AS MEASURED BY  A  UNIFORM
AND RECOGNIZED ASSESSMENT METHODOLOGY;
  2.  THE  NATURE  OF THE INDIVIDUAL'S LIVING SITUATION WHICH SHALL TAKE
INTO ACCOUNT THE AGE AND HEALTH OF FAMILY  CAREGIVERS,  THE  ABILITY  OF
FAMILY CAREGIVERS TO CONTINUE TO PROVIDE CARE, THE LENGTH OF TIME FAMILY
CAREGIVERS HAVE CARED FOR THE INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES
AT  HOME,  THE INABILITY OF FAMILY CAREGIVERS TO MANAGE THE INDIVIDUAL'S
NEEDS, INCLUDING BEHAVIORAL NEEDS, THE LIKELIHOOD THE FAMILY  CAREGIVERS
WILL  OR MUST ALTER THEIR LIVING SITUATION SO THAT CONTINUING CARE IS NO
LONGER PRACTICAL, AND OTHER FACTORS RELATING TO THE  ABILITY  OF  FAMILY
CAREGIVERS TO CONTINUE TO PROVIDE CARE; AND
  3.  WHETHER  AN  INDIVIDUAL IS CATEGORIZED FOR PLACEMENT PURPOSES AS A
PRIORITY ONE INDIVIDUAL AS DEFINED IN THE  STATE'S  HOME  AND  COMMUNITY
BASED  SERVICES WAIVER APPLICATION.  INDIVIDUALS SHALL NOT AUTOMATICALLY
BE DESIGNATED PRIORITY ONE BASED SOLELY ON  THEIR  STATUS  AS  A  PERSON
BELONGING TO A "SPECIAL POPULATION." HOWEVER, IN THE EVENT THAT A DEVEL-
OPMENTAL  DISABILITIES  REGIONAL  OFFICE  HAS  DETERMINED  THAT A PERSON
DESIGNATED AS A MEMBER OF A "SPECIAL POPULATION," AND THAT  SUCH  PERSON
MEETS  THE  CRITERIA  FOR PRIORITY ONE, AND THAT AN EMERGENCY EXISTS, AS
DEFINED BY SUCH WAIVER; THE DEVELOPMENTAL DISABILITIES  REGIONAL  OFFICE
MAY  MAKE  A REFERRAL TO A PROVIDER FOR AN EVALUATION AND PLACEMENT. THE
DEPARTMENT, IN CONSULTATION WITH THE OFFICE  FOR  PEOPLE  WITH  DEVELOP-
MENTAL  DISABILITIES, SHALL SEEK ANY NECESSARY AMENDMENTS TO THE STATE'S
HOME AND COMMUNITY BASED SERVICES WAIVER APPLICATION TO  EFFECTUATE  THE
PURPOSES OF THIS SECTION.
  S  4. The commissioner of health and the commissioner of developmental
disabilities shall implement the provisions of this act within 120  days
of the effective date thereof.
  S 5. This act shall take effect immediately.