NY State Senate Bill 2019-S3789

Senate Bill S3789

2019-2020 Legislative Session

Relates to the creation of a bill of rights for family and guardians of people with developmental disabilities that reside in residences certified or approved by the OPWDD

download bill text pdf

Archive: Last Bill Status - In Senate Committee Mental Health And Developmental Disabilities Committee

Introduced
- In Committee Assembly
- In Committee Senate
- On Floor Calendar Assembly
- On Floor Calendar Senate
- Passed Assembly
- Passed Senate
Delivered to Governor
Signed By Governor

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Actions

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	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Jan 08, 2020	referred to mental health and developmental disabilities
Feb 26, 2019	reported and committed to finance
Feb 14, 2019	referred to mental health and developmental disabilities

Votes

- Feb 26, 2019 - Committee Vote
  S3789
  
  4
  
  Aye
  
  0
  
  Nay
  
  3
  
  Aye with Reservations
  
  0
  
  Absent
  
  0
  
  Excused
  
  0
  
  Abstained
  - - Committee Vote: Feb 26, 2019
      
      aye (4)
      
      Brooks
      
      Carlucci
      
      Rivera
      
      Sepúlveda
      
      aye wr (3)
      
      Amedore
      
      Kaplan
      
      Ortt

2019-S3789 (ACTIVE) - Details

See Assembly Version of this Bill:: A3150
Current Committee:: Senate Mental Health And Developmental Disabilities
Law Section:: Mental Hygiene Law
Laws Affected:: Add §13.04, Ment Hyg L
Versions Introduced in Other Legislative Sessions:: 2013-2014: S5223, A7312
2015-2016: S3634, A424
2017-2018: S1157, A5482
2021-2022: S6695, A6069

2019-S3789 (ACTIVE) - Summary

Relates to the creation of a bill of rights for family and guardians of people with developmental disabilities that reside in residences certified or approved by the office for people with developmental disabilities.

2019-S3789 (ACTIVE) - Sponsor Memo

                                
 
BILL NUMBER: S3789

SPONSOR: CARLUCCI
 
TITLE OF BILL:  An act to amend the mental hygiene law, in relation to
creating a bill of rights for family and guardians of people with devel-
opmental disabilities that reside in residences certified or approved by
the office for people with developmental disabilities

 
PURPOSE OR GENERAL IDEA OF BILL:

The bill creates a "Family Bill of Rights and Privileges" for qualified
personal representatives of an individual with developmental disabili-
ties.

 
SUMMARY OF PROVISIONS:

Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a "Family Bill of Rights and Privileges" for
qualified personal representatives of individuals with developmental
disabilities who receive services from a covered provider.

A "qualified personal representative" means a spouse, parent, adult
child, adult sibling, legal guardian or personal representative of an
individual with disabilities who is receiving services from a covered
provider. A covered provider means and includes any entity, providing
residential services or non-residential services or programs to one or
more persons with a developmental disability that is licensed, operated
or certified by the office for people with developmental disabilities
(OPWDD).

Section 1 provides that in addition to all other rights and privileges
under law, a qualified personal representative shall have the generally-
described rights and privileges set forth, including to:

1. Participate in and provide meaningful input into the development,
review and revision of the individual's care plan.

2. Access information regarding the individual's health and safety,
consistent with federal and state confidentiality protections.

3. Be notified within a reasonable time of any event that directly
impacts the individual's health and safety, consistent with federal and
state confidentiality protections.

4. Access information necessary to make informed decisions, when appro-
priate, about the individual's care and care coordination.

5. Visit unannounced.

6. Choose a care coordinator.

7. Financial transparency, consistent with federal and state confiden-
tiality requirements.

8. Be informed of staffing changes.

9. Be informed in writing in plain language with up-to-date information
about the system of care and services for persons with developmental
disabilities; the laws rules and regulations applicable to the rights of
family members and personal representatives to participate in decisions
and access information, records, etc.; and the procedures to challenge
any decision affecting the individual.

An individual receiving services, who is competent to do so, may limit
the rights and privileges afforded a qualified personal representative
as provided in this section.

Nothing in this section shall be read to limit any other rights or priv-
ileges that a qualified representative may have or limit any action or
relief otherwise permitted by law.

Each covered provider shall conspicuously post a copy of the bill of
rights and privileges in a public place at each of the covered provid-
er's facilities. The commissioner shall post a copy on the office's
website; make copies of the bill in English, and the top six languages
other than English spoken in the state; establish a public education
program to disseminate information regarding implementation of this
section; include information detailing the efforts to effectuate this
section in the statewide comprehensive plan required pursuant to section
5.07 of this chapter; and adopt all rules and regulations necessary to
effectuate this section.

Section 2 is the effective date.

 
JUSTIFICATION:

Family advocates have expressed growing frustration with the lack of
access to information regarding the care of a loved one residing in
residences certified or licensed by OPWDD. Parents, family members and
guardians are frustrated by the lack of input on placement decisions,
and the lack of notification or access to events and information regard-
ing the health and safety of their family member.

As New York State moves towards a managed health care system, parents
are concerned about what this will mean for their children with develop-
mental disabilities. These concerns include whether this transition will
result in reduced communication with, and less transparency from the
managed care entities. Accordingly, parent advocates have expressed the
need for input in choosing a care coordinator, making sure there is a
program to advocate on behalf of their family member's needs, and access
to information that is needed to make informed decisions.

The rights and privileges enumerated in this bill will ensure that fami-
ly members and legal representatives have access to important informa-
tion about the care being provided for their developmentally disabled
family member.

 
PRIOR LEGISLATIVE HISTORY:

2017-18: A 5482 referred to mental health; same as S1157 (Ortt) referred
to mental health and developmental disabilities;
2015-16: A.424-A passed Assembly; same as S.3634-A (Ortt) referred to
mental health and developmental disabilities;
2013-14: A.7312-D passed. Assembly; same as S.5223-D (Ortt) referred to
mental health and developmental disabilities

 
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS:
To be determined.

 
EFFECTIVE DATE:
This act shall take effect immediately.

2019-S3789 (ACTIVE) - Bill Text download pdf

                            
 
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   3789
 
                        2019-2020 Regular Sessions
 
                             I N  S E N A T E
 
                             February 14, 2019
                                ___________
 
 Introduced  by Sen. CARLUCCI -- read twice and ordered printed, and when
   printed to be committed to the Committee on Mental Health and Develop-
   mental Disabilities
 
 AN ACT to amend the mental hygiene law, in relation to creating  a  bill
   of  rights for family and guardians of people with developmental disa-
   bilities that reside in residences certified or approved by the office
   for people with developmental disabilities
 
   THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section  1.  The mental hygiene law is amended by adding a new section
 13.04 to read as follows:
 § 13.04 FAMILY BILL OF RIGHTS AND PRIVILEGES.
   (A) THE PRINCIPLES IN THE BILL OF RIGHTS AND PRIVILEGES SET  FORTH  IN
 THIS SECTION ARE DECLARED TO BE  THE PUBLIC POLICY OF THE STATE.
   (B) FOR PURPOSES OF THIS SECTION:
   (1)  "QUALIFIED PERSONAL REPRESENTATIVE" MEANS A SPOUSE, PARENT, ADULT
 CHILD, ADULT SIBLING, LEGAL GUARDIAN OR PERSONAL  REPRESENTATIVE  OF  AN
 INDIVIDUAL  WITH  DEVELOPMENTAL  DISABILITIES  WHO IS RECEIVING SERVICES
 FROM A COVERED PROVIDER.
   (2) "COVERED PROVIDER" MEANS AND INCLUDES ANY ENTITY, PROVIDING  RESI-
 DENTIAL SERVICES OR NON-RESIDENTIAL  SERVICES OR PROGRAMS TO ONE OR MORE
 PERSONS  WITH  A DEVELOPMENTAL DISABILITY, THAT IS LICENSED, OPERATED OR
 CERTIFIED BY THE OFFICE.
   (C) IN ADDITION TO ALL OTHER RIGHTS AND PRIVILEGES UNDER LAW, A QUALI-
 FIED PERSONAL REPRESENTATIVE SHALL HAVE THE FOLLOWING RIGHTS AND  PRIVI-
 LEGES  SET FORTH BELOW (THE "FAMILY BILL OF RIGHTS AND PRIVILEGES") WITH
 RESPECT TO THEIR INDIVIDUAL FAMILY MEMBERS WITH DEVELOPMENTAL  DISABILI-
 TIES.
                  "FAMILY BILL OF RIGHTS AND PRIVILEGES"
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD02442-01-9

 S. 3789                             2
 
   A  QUALIFIED PERSONAL REPRESENTATIVE SHALL HAVE THE FOLLOWING GENERAL-
 LY-DESCRIBED RIGHTS AND  PRIVILEGES  CONCERNING  A  FAMILY  MEMBER  WITH
 DEVELOPMENTAL DISABILITIES RECEIVING SERVICES; TO:
   BE TREATED WITH CONSIDERATION AND RESPECT.
   PARTICIPATE  IN  AND  PROVIDE  MEANINGFUL  INPUT INTO THE DEVELOPMENT,
 REVIEW AND REVISION OF THE INDIVIDUAL'S CARE PLAN,  INCLUDING  PLACEMENT
 OR TRANSFER WITHIN OR BETWEEN FACILITIES.
   ACCESS  INFORMATION  REGARDING  THE  INDIVIDUAL'S  HEALTH  AND SAFETY,
 CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
   BE NOTIFIED WITHIN A  REASONABLE  TIME  OF  ANY  EVENT  THAT  DIRECTLY
 IMPACTS  THE INDIVIDUAL'S HEALTH AND SAFETY, CONSISTENT WITH FEDERAL AND
 STATE CONFIDENTIALITY PROTECTIONS.
   ACCESS INFORMATION NECESSARY FOR A QUALIFIED  PERSONAL  REPRESENTATIVE
 TO  MAKE  INFORMED  DECISIONS,  WHEN APPROPRIATE, ABOUT THE INDIVIDUAL'S
 CARE AND CARE COORDINATION.
   FINANCIAL TRANSPARENCY, INCLUDING ACCESS TO BUDGETARY  INFORMATION  OF
 THE  FACILITY AND INDIVIDUAL EXPENSES, CONSISTENT WITH FEDERAL AND STATE
 CONFIDENTIALITY PROTECTIONS.
   VISIT UNANNOUNCED.
   BE INFORMED OF STAFFING CHANGES.
   ACCESS A FACILITY'S FIRE AND OTHER SAFETY PLANS  AND  ANY  INFORMATION
 REGARDING A FACILITY'S PASSAGE OR FAILURE OF ANY SAFETY DRILLS CONDUCTED
 BY THE FACILITY AND THE OFFICE.
   ACCESS A FACILITY'S FOOD MENUS.
   CHOOSE A CARE COORDINATOR.
   CONSULT  AND BE REPRESENTED BY AN INDEPENDENT ADVOCATE, MENTAL HYGIENE
 LEGAL SERVICES OR AN ATTORNEY; AND IF SERVICES ARE PROVIDED UNDER  MEDI-
 CAID MANAGED CARE, TO HAVE A MEDICAID OMBUDSMAN.
   BE  INFORMED  IN WRITING IN PLAIN LANGUAGE WITH UP-TO-DATE INFORMATION
 ABOUT:
   (I) THE SYSTEM OF CARE AND SERVICES  FOR  PERSONS  WITH  DEVELOPMENTAL
 DISABILITIES, INCLUDING BUT NOT LIMITED TO MANAGED CARE;
   (II)  THE  LAWS,  RULES,  AND  REGULATIONS APPLICABLE TO THE RIGHTS OF
 FAMILY MEMBERS AND OTHER  PERSONAL  REPRESENTATIVES  TO  PARTICIPATE  IN
 DECISIONS  ABOUT  THE  INDIVIDUAL'S  LIFE  AND  TO  ACCESS  INFORMATION,
 RECORDS, REPORTS, CARE PLANS, ETC.; AND
   (III) THE PROCEDURES TO CHALLENGE ANY DECISION AFFECTING THE  INDIVID-
 UAL.
   NOTHING  IN  THIS  BILL OF RIGHTS AND PRIVILEGES SHALL LIMIT ANY OTHER
 RIGHT OR PRIVILEGE UNDER LAW. IF ANY RESIDENTIAL FACILITY  OR  NON-RESI-
 DENTIAL  SERVICE  PROVIDER  FAILS TO AFFORD THESE RIGHTS AND PRIVILEGES,
 ASSISTANCE MAY BE SOUGHT FROM THE FACILITY OR PROVIDER, OR THE OFFICE.
   (D) A QUALIFIED PERSONAL REPRESENTATIVE MAY, IN  ACCORDANCE  WITH  LAW
 AND APPROPRIATE DUE PROCESS, NOT EXERCISE A RIGHT OR PRIVILEGE DESCRIBED
 IN  THIS  SECTION  IF  THE SUBJECT INDIVIDUAL RECEIVING SERVICES, WHO IS
 COMPETENT TO DO SO, SPECIFICALLY AFFIRMS, IN A REASONABLY  CONTEMPORANE-
 OUS  MANNER,  THAT  SUCH  IDENTIFIED   QUALIFIED PERSONAL REPRESENTATIVE
 SHALL NOT BE AFFORDED SUCH SPECIFIC RIGHT OR  PRIVILEGE.  SUCH  DETERMI-
 NATION  BY  THE  SUBJECT  INDIVIDUAL  SHALL BE DESCRIBED AND RECORDED IN
 WRITING IN THE CASE FILE BY APPROPRIATE STAFF OF THE FACILITY OR SERVICE
 PROVIDER AND A STATEMENT OF REASONS FOR SUCH DENIAL SHALL BE PROVIDED TO
 THE QUALIFIED PERSONAL REPRESENTATIVE.
   (E) THE STATEMENT OF RIGHTS AND PRIVILEGES SET FORTH IN  THIS  SECTION
 IS  INTENDED  TO  BE A GUIDE TO   THE RIGHTS AND PRIVILEGES OF QUALIFIED
 PERSONAL REPRESENTATIVES OF INDIVIDUALS WITH DEVELOPMENTAL  DISABILITIES
 RECEIVING RESIDENTIAL AND NON-RESIDENTIAL SERVICES.

 S. 3789                             3
 
   (F) NOTHING IN THIS SECTION SHALL BE READ TO LIMIT ANY OTHER RIGHTS OR
 PRIVILEGES THAT QUALIFIED PERSONAL REPRESENTATIVES MAY HAVE OR LIMIT ANY
 ACTION  OR  RELIEF OTHERWISE PERMITTED BY LAW. NOTHING IN THIS  SUBDIVI-
 SION SHALL ALTER OR AFFECT ANY RIGHT OF  APPEAL,  FORMAL  OR  OTHERWISE,
 SUCH PERSONAL REPRESENTATIVE MAY HAVE  CONCERNING THE DENIAL OF ANY SUCH
 RIGHT.
   (G)  EACH COVERED PROVIDER SHALL CONSPICUOUSLY POST A COPY OF THE BILL
 OF RIGHTS AND PRIVILEGES IN A  PUBLIC  PLACE  AT  EACH  OF  THE  COVERED
 PROVIDER'S FACILITIES.
   (H) THE COMMISSIONER SHALL:
   (1)  POST  A COPY OF THE BILL OF RIGHTS AND PRIVILEGES ON THE OFFICE'S
 WEBSITE;
   (2) MAKE COPIES OF THE BILL OF RIGHTS AND PRIVILEGES IN  ENGLISH,  AND
 THE  TOP SIX LANGUAGES OTHER THAN ENGLISH SPOKEN IN THE STATE (ACCORDING
 TO THE LATEST AVAILABLE DATA FROM THE U.S. BUREAU OF CENSUS)   AVAILABLE
 TO THE PUBLIC AND EVERY PROVIDER;
   (3)  ESTABLISH  A  PUBLIC  EDUCATION  PROGRAM  DESIGNED TO DISSEMINATE
 INFORMATION REGARDING  IMPLEMENTATION OF THIS SECTION;
   (4) INCLUDE SPECIFIC INFORMATION DETAILING THE EFFORTS OF THE  COMMIS-
 SIONER  TO  EFFECTUATE  THIS SECTION IN THE STATEWIDE COMPREHENSIVE PLAN
 REQUIRED PURSUANT TO SECTION 5.07 OF THIS CHAPTER;
   (5) ADOPT ALL RULES  AND  REGULATIONS  NECESSARY  TO  EFFECTUATE  THIS
 SECTION.
   § 2. This act shall take effect immediately.

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