senate Bill S5223D

2013-2014 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

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Sponsored By

Archive: Last Bill Status - In Committee


  • Introduced
  • In Committee
  • On Floor Calendar
    • Passed Senate
    • Passed Assembly
  • Delivered to Governor
  • Signed/Vetoed by Governor

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Actions

view actions (12)
Assembly Actions - Lowercase
Senate Actions - UPPERCASE
Jun 19, 2014 print number 5223d
amend and recommit to finance
May 12, 2014 print number 5223c
amend (t) and recommit to finance
Apr 29, 2014 reported and committed to finance
Jan 08, 2014 referred to mental health and developmental disabilities
Dec 18, 2013 print number 5223b
amend and recommit to finance
Jun 13, 2013 amend and recommit to finance
Jun 13, 2013 print number 5223a
May 22, 2013 reported and committed to finance
May 14, 2013 referred to mental health and developmental disabilities

Bill Amendments

Original
A
B
C
D (Active)
Original
A
B
C
D (Active)

S5223 - Bill Details

See Assembly Version of this Bill:
A7312D
Current Committee:
Law Section:
Mental Hygiene Law
Laws Affected:
Add §13.04, Ment Hyg L

S5223 - Bill Texts

view 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.

view sponsor memo
BILL NUMBER:S5223

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
developmental disabilities that reside in residences funded, licensed
and operated by the office for people with developmental disabilities

PURPOSE: The bill creates a bill of rights for family members and
guardians of people with developmental disabilities.

SUMMARY OF PROVISIONS:

Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a bill of rights for qualified family members
and guardians of individuals with developmental disabilities who
reside in residences that are funded, licensed, and operated by the
office.

The bill of rights enumerates several rights that family members and
guardians should have in regards to access to information. These
rights include: access to fire safety plans, meal menus, immediate
notification of an event that impacts the health and safety of an
individual, and the right to have input on any decision regarding
placement or transfer of an individual with developmental disabilities
in a residence, The bill also puts in place certain rights with
respect to Medicaid waivers obtained by the state including the right
to independent advocates and the right to choose a care coordinator.

A qualified family member includes parents, siblings, spouse, aunts or
uncles, grandparents, and the adult child of an individual with
developmental disabilities.

Section 2 is the effective date

JUSTIFICATION: Family advocates have expressed their growing
frustrations with the lack of access to information regarding the care
of a loved one residing in an residence operated by OPWDD. Parents,
family members and guardians are frustrated by the lack of family
input on placement decisions and by the lack of notification of, or
access to, events and information regarding the health and safety of
their family member. As the New York State moves towards a managed
care system, parents are very concerned about what this will mean for
their children with developmental disabilities. They are concerned
that this transition will result in a lack of communication with, and
transparency from, the managed care entities. This is why 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 to have access to any information
that is needed to make an informed decision. The rights enumerated in
this bill will ensure that family members and guardians have access to
important information about the care being provided for their family
member with a developmental disability.

LEGISLATIVE HISTORY: New bill.

FISCAL IMPLICATIONS: To be determined


EFFECTIVE DATE: Effective immediately

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

                                  5223

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                              May 14, 2013
                               ___________

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 funded, licensed  and  operated  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:
S 13.04 FAMILY BILL OF RIGHTS.
  (A)  THE  PRINCIPLES ENUNCIATED IN SUBDIVISION (C) OF THIS SECTION ARE
DECLARED TO BE THE PUBLIC POLICY OF THE STATE AND A COPY OF SUCH  STATE-
MENT  OF  RIGHTS SHALL BE POSTED CONSPICUOUSLY IN A PUBLIC PLACE IN EACH
RESIDENCE FUNDED, LICENSED AND OPERATED BY THE OFFICE. FOR  PURPOSES  OF
THIS SECTION, "QUALIFIED FAMILY MEMBER" MEANS A PARENT, SPOUSE, SIBLING,
GRANDPARENT, AUNT, UNCLE OR AN ADULT CHILD OF THE RESIDENT.
  (B)  THE  COMMISSIONER SHALL MAKE AVAILABLE TO EVERY RESIDENCE FUNDED,
LICENSED AND OPERATED BY THE OFFICE, ON THE OFFICE'S WEBSITE A  COPY  OF
THE  STATEMENT  OF RIGHTS PROVIDED IN SUBDIVISION (C) OF THIS SECTION IN
THE TOP SIX LANGUAGES OTHER THAN ENGLISH SPOKEN IN THE  STATE  ACCORDING
TO  THE  LATEST AVAILABLE DATA FROM THE U.S. BUREAU OF CENSUS, AND SHALL
ADOPT ANY RULES AND REGULATIONS NECESSARY TO ENSURE THAT SUCH  QUALIFIED
FAMILY  MEMBERS  AND  GUARDIANS  ARE  TREATED  IN  ACCORDANCE  WITH  THE
PROVISIONS OF SUCH STATEMENT.
  (C) THE STATEMENT OF RIGHTS SHALL CONSIST OF THE FOLLOWING:
  "FAMILY BILL OF RIGHTS"
  QUALIFIED FAMILY MEMBERS AND GUARDIANS SHALL HAVE THE FOLLOWING RIGHTS
IN REGARDS TO A RESIDENT WHO RESIDES IN A RESIDENCE FUNDED, OPERATED  OR
LICENSED BY THE OFFICE. THESE RIGHTS SHALL INCLUDE:

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10708-04-3

S. 5223                             2

  YOU  HAVE  THE  RIGHT TO HAVE ACCESS TO A RESIDENCE'S FIRE SAFETY PLAN
AND ANY INFORMATION REGARDING A RESIDENCE'S PASSAGE OR  FAILURE  OF  ANY
FIRE SAFETY DRILLS CONDUCTED BY THE RESIDENCE AND THE OFFICE.
  YOU  HAVE  THE RIGHT TO IMMEDIATE NOTIFICATION OF ANY EVENT THAT WOULD
IMPACT THE HEALTH AND SAFETY OF THE INDIVIDUAL.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO INFORMATION REGARDING THE  HEALTH
AND SAFETY OF THE INDIVIDUAL.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO A RESIDENCE'S FOOD MENUS.
  YOU  HAVE  THE  RIGHT  FOR A QUALIFIED FAMILY MEMBER OR GUARDIAN TO BE
ABLE TO HAVE UNANNOUNCED VISITS.
  YOU HAVE THE RIGHT TO HAVE INPUT IN ANY DECISION MADE BY THE OFFICE OR
LOCAL GOVERNMENTAL UNIT REGARDING THE APPROPRIATE PLACEMENT OF A  PERSON
WITH  DEVELOPMENTAL  DISABILITIES  WITHIN A RESIDENCE OR THE DECISION TO
TRANSFER A PERSON WITH DEVELOPMENTAL DISABILITIES FROM ONE RESIDENCE  TO
ANOTHER.
  YOU HAVE THE RIGHT TO FINANCIAL TRANSPARENCY INCLUDING ACCESS TO BUDG-
ETARY INFORMATION OF THE RESIDENCE INCLUDING INDIVIDUAL EXPENSES.
  YOU  HAVE  THE  RIGHT TO ACCESS ALL JUSTICE CENTER REPORTS OF INVESTI-
GATIONS OF ALLEGATIONS OF ABUSE AND ANY REPORTS REGARDING FINAL DETERMI-
NATIONS REGARDING ANY DEATHS OR ABUSE IN RESIDENTIAL FACILITIES.
  YOU HAVE THE RIGHT TO BE INFORMED REGARDING ANY STAFFING CHANGES.
  FOR PURPOSES OF MEDICAID WAIVERS OBTAINED BY THE STATE:
  YOU HAVE THE RIGHT TO CHOOSE A CARE COORDINATOR
  YOU HAVE THE RIGHT TO HAVE ACCESS TO  ALL  DOCUMENTS  AND  INFORMATION
REGARDING CARE AND PROGRAMS
  YOU HAVE THE RIGHT TO INDEPENDENT ADVOCATES
  YOU  HAVE THE RIGHT TO MANDATED PROCEDURES IF QUALIFIED FAMILY MEMBERS
OR GUARDIANS NEED TO CHALLENGE A DECISION
  ALL THE ABOVE ARE YOUR RIGHTS. IF THE RESIDENTIAL  FACILITY  DOES  NOT
HONOR  THESE  RIGHTS  YOU CAN SEEK HELP BY CONTACTING THE NEW YORK STATE
DEPARTMENT OF HEALTH OR BY CONTACTING THE RESIDENTIAL FACILITY.
  (D) THE COMMISSIONER SHALL ESTABLISH A  PUBLIC  EDUCATION  PROGRAM  TO
DISSEMINATE  INFORMATION  REGARDING IMPLEMENTATION OF THIS SECTION. SUCH
INFORMATION SHALL INCLUDE, BUT NOT BE LIMITED  TO,  PUBLICATION  OF  THE
FAMILY  BILL  OF RIGHTS AS SPECIFIED IN SUBDIVISION (C) OF THIS SECTION;
PUBLICATION OF THE RIGHTS OF QUALIFIED FAMILY MEMBERS AND GUARDIANS OF A
RESIDENT WHO RESIDES IN A RESIDENCE FUNDED, OPERATED OR LICENSED BY  THE
OFFICE; AND PUBLICATION OF CERTAIN PROVISIONS RELATING TO MEDICAID WAIV-
ERS OBTAINED BY THE STATE.
  S 2. This act shall take effect immediately.

S5223A - Bill Details

See Assembly Version of this Bill:
A7312D
Current Committee:
Law Section:
Mental Hygiene Law
Laws Affected:
Add §13.04, Ment Hyg L

S5223A - Bill Texts

view 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.

view sponsor memo
BILL NUMBER:S5223A

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
developmental disabilities that reside in residences funded, licensed
and operated by the office for people with developmental disabilities

PURPOSE:

The bill creates a bill of rights for family members and guardians of
people with developmental disabilities

SUMMARY OF PROVISIONS:

Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a bill of rights for qualified family members
and guardians of individuals with developmental disabilities who
receives services from providers who are operated, licensed or funded
by the office.

The bill of rights enumerates several rights that family members and
guardians should have in regards to access to information These rights
include: access to fire safety plans, meal menus, notification of an
event that directly impacts the health and safety of an individual,
the right to receive information necessary to make informed decisions
about the care of an individual, the right to have meaningful
participation and input into the plan of care and to be advised in
writing of any laws, regulations or rules that apply to a family
member or guardian's ability to access information or participate in
decisions about the individual's life.

The bill also respects that an individual with disabilities may want
to limit the involvement of certain family members by qualifying that
rights to access to information, coordination of care etc will be
limited if the individual with developmental disabilities has stated
that they do not wish a family member to be involved.

Access to information will also be in compliance with federal and
state confidentiality protections to protect other individuals with
developmental disabilities health information. A qualified family
member includes parents, adult siblings, spouse, and the adult child
of an individual with developmental disabilities.

Section 2 is the effective date

JUSTIFICATION:.

Family advocates have expressed their growing frustrations with the
lack of access to information regarding the care of a loved one
residing in an residence operated by OPWDD. Parents, family members
and guardians are frustrated by the lack of family input on placement
decisions and by the lack of notification of, or access to, events and
information regarding the health and safety of their family member. As
the New York State moves towards a managed care system, parents are
very concerned about what this will mean for their children with
developmental disabilities They are concerned that this transition
will result in a lack of communication with, and transparency from,


the managed care entities. This is why 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
to have access to any information that is needed to make an informed
decision. The rights enumerated in this bill will ensure that family
members and guardians have access to important information about the
care being provided for their family member with a developmental
disability.

LEGISLATIVE HISTORY:

New bill

FISCAL IMPLICATIONS:

To be determined

EFFECTIVE DATE:

Effective immediately

view full text
download pdf
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 5223--A

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                              May 14, 2013
                               ___________

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 -- reported  favorably  from  said  committee  and
  committed  to  the  Committee on Finance -- committee discharged, bill
  amended, ordered reprinted as amended and recommitted to said  commit-
  tee

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 funded, licensed and operated 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:
S 13.04 FAMILY BILL OF RIGHTS.
  (A) THE PRINCIPLES ENUNCIATED IN SUBDIVISION (D) OF THIS  SECTION  ARE
DECLARED  TO BE THE PUBLIC POLICY OF THE STATE AND A COPY OF SUCH STATE-
MENT OF RIGHTS SHALL BE POSTED CONSPICUOUSLY IN A PUBLIC PLACE  IN  EACH
PROVIDER  OF  SERVICES  AND  RESIDENTIAL  FACILITY OPERATED, LICENSED OR
FUNDED BY THE OFFICE. FOR PURPOSES OF THIS  SECTION,  "QUALIFIED  FAMILY
MEMBER"  MEANS  A PARENT, SPOUSE, ADULT SIBLING OR AN ADULT CHILD OF THE
RESIDENT.
  (B) THE  COMMISSIONER  SHALL  MAKE  AVAILABLE  TO  EVERY  PROVIDER  OF
SERVICES  AND  RESIDENCE  OPERATED, LICENSED OR FUNDED BY THE OFFICE, ON
THE OFFICE'S WEBSITE A COPY OF  THE  STATEMENT  OF  RIGHTS  PROVIDED  IN
SUBDIVISION  (D)  OF  THIS  SECTION 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, AND SHALL ADOPT ANY RULES AND REGU-
LATIONS NECESSARY TO ENSURE THAT SUCH QUALIFIED FAMILY MEMBERS AND GUAR-
DIANS ARE TREATED IN ACCORDANCE WITH THE PROVISIONS OF SUCH STATEMENT.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10708-12-3

S. 5223--A                          2

  (C) SUCH RIGHTS SHALL APPLY TO FAMILY MEMBERS DEFINED  IN  SUBDIVISION
(A)  OF THIS SECTION PROVIDED HOWEVER, SUCH RIGHTS SHALL NOT APPLY IF AN
INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES HAS SPECIFICALLY STATED  THAT
SUCH  FAMILY  MEMBERS SHALL NOT HAVE ACCESS TO ANY PERSONAL INFORMATION,
BE  INVOLVED IN ANY CARE PLANNING OR COORDINATION, OR BE INVOLVED IN ANY
HEALTH CARE DECISIONS.
  (D) THE STATEMENT OF RIGHTS SHALL CONSIST OF THE FOLLOWING:
  "FAMILY BILL OF RIGHTS"
  QUALIFIED FAMILY MEMBERS AND GUARDIANS SHALL HAVE THE FOLLOWING RIGHTS
IN REGARDS TO AN INDIVIDUAL RECEIVING SERVICES THROUGH PROGRAMS, INCLUD-
ING, BUT NOT  LIMITED  TO,  RESIDENTIAL  SERVICES,  THAT  ARE  OPERATED,
LICENSED OR FUNDED BY THE OFFICE.  THESE RIGHTS SHALL INCLUDE:
  YOU HAVE THE RIGHT TO BE TREATED WITH CONSIDERATION AND RESPECT.
  YOU  HAVE  THE  RIGHT TO HAVE ACCESS TO A RESIDENCE'S FIRE SAFETY PLAN
AND ANY INFORMATION REGARDING A RESIDENCE'S PASSAGE OR  FAILURE  OF  ANY
FIRE SAFETY DRILLS CONDUCTED BY THE RESIDENCE AND THE OFFICE.
  YOU  HAVE  THE RIGHT TO NOTIFICATION WITHIN A REASONABLE TIME FRAME OF
ANY EVENT THAT DIRECTLY IMPACTS THE HEALTH AND SAFETY OF THE INDIVIDUAL,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO INFORMATION REGARDING THE  HEALTH
AND  SAFETY  OF THE INDIVIDUAL, CONSISTENT WITH FEDERAL AND STATE CONFI-
DENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO A RESIDENCE'S FOOD MENUS.
  YOU HAVE THE RIGHT FOR A QUALIFIED FAMILY MEMBER  OR  GUARDIAN  TO  BE
ABLE TO HAVE UNANNOUNCED VISITS.
  YOU  HAVE  THE RIGHT TO RECEIVE INFORMATION NECESSARY TO MAKE INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE OF THE INDIVIDUAL.
  YOU HAVE THE RIGHT TO HAVE MEANINGFUL PARTICIPATION  AND  INPUT  INTO,
AND  ONGOING REVIEW AND INVOLVEMENT WITH, THE INDIVIDUAL'S PLAN OF CARE,
INCLUDING BUT NOT LIMITED TO ANY DECISION REGARDING  APPROPRIATE  PLACE-
MENT OR TRANSFER OF AN INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES WITHIN
A RESIDENCE OPERATED, LICENSED OR FUNDED BY THE OFFICE.
  YOU HAVE THE RIGHT TO FINANCIAL TRANSPARENCY INCLUDING ACCESS TO BUDG-
ETARY  INFORMATION  OF  THE  RESIDENCE  INCLUDING  INDIVIDUAL  EXPENSES,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO BE INFORMED REGARDING ANY STAFFING CHANGES.
  YOU HAVE THE RIGHT TO BE GIVEN CLEAR, UP TO DATE, UNDERSTANDABLE,  AND
HONEST  INFORMATION  ABOUT  THE  SYSTEM OF CARE AND SERVICES FOR PERSONS
WITH DEVELOPMENTAL DISABILITIES, INCLUDING BUT NOT  LIMITED  TO  MANAGED
CARE.
  YOU  HAVE  THE  RIGHT  TO BE ADVISED IN WRITING OF ANY LAWS, RULES, OR
REGULATIONS THAT APPLY TO A QUALIFIED  FAMILY  MEMBER'S  AND  GUARDIAN'S
ABILITY  TO  ACCESS  INFORMATION  OR  PARTICIPATE IN DECISIONS ABOUT THE
INDIVIDUAL'S LIFE, INCLUDING BUT NOT LIMITED  TO,  GUARDIANSHIP  ISSUES,
AND  ACCESS  TO  RECORDS,  REPORTS,  PLANS  OF CARE, AND OTHER PERTINENT
INFORMATION.
  FOR PURPOSES OF MEDICAID WAIVERS OBTAINED BY THE STATE:
  YOU HAVE THE RIGHT TO CHOOSE A CARE COORDINATOR.
  YOU HAVE THE RIGHT TO RECEIVE INFORMATION NECESSARY TO  MAKE  INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE COORDINATION OF THE INDIVID-
UAL.
  YOU HAVE THE RIGHT TO INDEPENDENT ADVOCATES.
  YOU HAVE THE RIGHT TO BE NOTIFIED IN WRITING ABOUT ALL MANDATED PROCE-
DURES IF QUALIFIED FAMILY MEMBERS OR GUARDIANS NEED TO CHALLENGE A DECI-
SION.

S. 5223--A                          3

  ALL THE ABOVE ARE YOUR RIGHTS. IF THE PROVIDER OR RESIDENTIAL FACILITY
DOES NOT HONOR THESE RIGHTS YOU CAN SEEK HELP BY CONTACTING THE NEW YORK
STATE DEPARTMENT OF HEALTH OR BY CONTACTING THE RESIDENTIAL FACILITY.
  (E)  THE  COMMISSIONER  SHALL  ESTABLISH A PUBLIC EDUCATION PROGRAM TO
DISSEMINATE INFORMATION REGARDING IMPLEMENTATION OF THIS  SECTION.  SUCH
INFORMATION  SHALL  INCLUDE,  BUT  NOT BE LIMITED TO, PUBLICATION OF THE
FAMILY BILL OF RIGHTS AS SPECIFIED IN SUBDIVISION (D) OF  THIS  SECTION;
PUBLICATION OF THE RIGHTS OF QUALIFIED FAMILY MEMBERS AND GUARDIANS OF A
PERSON  RECEIVING  SERVICES FROM A PROVIDER OR IN A RESIDENTIAL FACILITY
OPERATED, LICENSED, OR FUNDED BY THE OFFICE; AND PUBLICATION OF  CERTAIN
PROVISIONS RELATING TO MEDICAID WAIVERS OBTAINED BY THE STATE.
  S 2. This act shall take effect immediately.

S5223B - Bill Details

See Assembly Version of this Bill:
A7312D
Current Committee:
Law Section:
Mental Hygiene Law
Laws Affected:
Add §13.04, Ment Hyg L

S5223B - Bill Texts

view 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.

view sponsor memo
BILL NUMBER:S5223B

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
developmental disabilities that reside in residences funded, licensed
and operated by the office for people with developmental disabilities

PURPOSE:

The bill creates a bill of rights for family members and guardians of
people with developmental disabilities.

SUMMARY OF PROVISIONS:

Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a bill of rights for qualified family members
and guardians of individuals with developmental disabilities who
receives services from providers who are operated, licensed or funded
by the office.

The bill of rights enumerates several rights that family members and
guardians should have in regards to access information. These rights
include: access to fire safety plans, meal menus, notification of an
event that directly impacts the health and safety of an individual,
the right to receive information necessary to make informed decisions
about the care of an individual, the right to have meaningful
participation and input into the plan of care and to be advised in
writing of any law, regulations or rules that apply to a family member
or guardian's ability to access information or participate in
decisions about the individual's life.

The bill also respects that an individual with disabilities may want
to limit the involvement of certain family members by qualifying that
rights to access to information, coordination of care etc, will be
limited if the individual with developmental disabilities has stated
that they do not wish a family member to be involved.

Access to information will also be in compliance with federal and
state confidentiality protections to protect other individuals with
developmental disabilities health information. A qualified family
member includes parents, adult siblings, spouse, and the adult child
of an individual with developmental disabilities.

Section 2 is the effective date.

JUSTIFICATION:

Family advocates have expressed their growing frustrations with the
lack of access to information regarding the care of a loved one
residing in an residence operated by OPWDD. Parents, family members
and guardians are frustrated by the lack of family input on placement
decisions and by the lack of notification of or access to, events and
information regarding the health and safety of their family member.
As the New York State moves towards a managed care system, parents are
very concerned about what this will mean for their children with
developmental disabilities They are concerned that this transition
will result in a lack of communication with, and transparency from,


the managed care entities. This is why 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
to have access to any information that is needed to make an informed
decision. The rights enumerated in this bill will ensure that family
members and guardians have access to important information about the
care being provided for their family member with a developmental
disability.

LEGISLATIVE HISTORY:

New bill.

FISCAL IMPLICATIONS:

To be determined.

EFFECTIVE DATE:

This act shall take effect immediately.

view full text
download pdf
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 5223--B

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                              May 14, 2013
                               ___________

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 -- reported  favorably  from  said  committee  and
  committed  to  the  Committee on Finance -- committee discharged, bill
  amended, ordered reprinted as amended and recommitted to said  commit-
  tee  --  committee  discharged,  bill  amended,  ordered  reprinted as
  amended and recommitted to said committee

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 funded, licensed  and  operated  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:
S 13.04 FAMILY BILL OF RIGHTS.
  (A)  THE  PRINCIPLES ENUNCIATED IN SUBDIVISION (D) OF THIS SECTION ARE
DECLARED TO BE THE PUBLIC POLICY OF THE STATE AND A COPY OF SUCH  STATE-
MENT  OF  RIGHTS SHALL BE POSTED CONSPICUOUSLY IN A PUBLIC PLACE IN EACH
PROVIDER OF SERVICES AND  RESIDENTIAL  FACILITY  OPERATED,  LICENSED  OR
FUNDED  BY  THE  OFFICE. FOR PURPOSES OF THIS SECTION, "QUALIFIED FAMILY
MEMBER" MEANS A PARENT, SPOUSE, ADULT SIBLING OR AN ADULT CHILD  OF  THE
RESIDENT.
  (B)  THE  COMMISSIONER  SHALL  MAKE  AVAILABLE  TO  EVERY  PROVIDER OF
SERVICES AND RESIDENCE OPERATED, LICENSED OR FUNDED BY  THE  OFFICE,  ON
THE  OFFICE'S  WEBSITE  A  COPY  OF  THE STATEMENT OF RIGHTS PROVIDED IN
SUBDIVISION (D) OF THIS SECTION 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, AND SHALL ADOPT ANY RULES AND REGU-
LATIONS NECESSARY TO ENSURE THAT SUCH QUALIFIED FAMILY MEMBERS AND GUAR-
DIANS ARE TREATED IN ACCORDANCE WITH THE PROVISIONS OF SUCH STATEMENT.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10708-15-3

S. 5223--B                          2

  (C)  SUCH  RIGHTS SHALL APPLY TO FAMILY MEMBERS DEFINED IN SUBDIVISION
(A) OF THIS SECTION PROVIDED HOWEVER, SUCH RIGHTS SHALL NOT APPLY IF  AN
INDIVIDUAL  WITH DEVELOPMENTAL DISABILITIES HAS SPECIFICALLY STATED THAT
SUCH FAMILY MEMBERS SHALL NOT HAVE ACCESS TO ANY  PERSONAL  INFORMATION,
BE  INVOLVED IN ANY CARE PLANNING OR COORDINATION, OR BE INVOLVED IN ANY
HEALTH CARE DECISIONS.
  (D) THE STATEMENT OF RIGHTS SHALL CONSIST OF THE FOLLOWING:
  "FAMILY BILL OF RIGHTS"
  QUALIFIED FAMILY MEMBERS AND GUARDIANS SHALL HAVE THE FOLLOWING RIGHTS
IN REGARDS TO AN INDIVIDUAL RECEIVING SERVICES THROUGH PROGRAMS, INCLUD-
ING, BUT NOT  LIMITED  TO,  RESIDENTIAL  SERVICES,  THAT  ARE  OPERATED,
LICENSED OR FUNDED BY THE OFFICE.  THESE RIGHTS SHALL INCLUDE:
  YOU HAVE THE RIGHT TO BE TREATED WITH CONSIDERATION AND RESPECT.
  YOU  HAVE  THE  RIGHT TO HAVE ACCESS TO A RESIDENCE'S FIRE SAFETY PLAN
AND ANY INFORMATION REGARDING A RESIDENCE'S PASSAGE OR  FAILURE  OF  ANY
FIRE SAFETY DRILLS CONDUCTED BY THE RESIDENCE AND THE OFFICE.
  YOU  HAVE  THE RIGHT TO NOTIFICATION WITHIN A REASONABLE TIME FRAME OF
ANY EVENT THAT DIRECTLY IMPACTS THE HEALTH AND SAFETY OF THE INDIVIDUAL,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO INFORMATION REGARDING THE  HEALTH
AND  SAFETY  OF THE INDIVIDUAL, CONSISTENT WITH FEDERAL AND STATE CONFI-
DENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO A RESIDENCE'S FOOD MENUS.
  YOU HAVE THE RIGHT FOR A QUALIFIED FAMILY MEMBER  OR  GUARDIAN  TO  BE
ABLE TO HAVE UNANNOUNCED VISITS.
  YOU  HAVE  THE RIGHT TO RECEIVE INFORMATION NECESSARY TO MAKE INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE OF THE INDIVIDUAL.
  YOU HAVE THE RIGHT TO HAVE MEANINGFUL PARTICIPATION  AND  INPUT  INTO,
AND  ONGOING REVIEW AND INVOLVEMENT WITH, THE INDIVIDUAL'S PLAN OF CARE,
INCLUDING BUT NOT LIMITED TO ANY DECISION REGARDING  APPROPRIATE  PLACE-
MENT OR TRANSFER OF AN INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES WITHIN
A RESIDENCE OPERATED, LICENSED OR FUNDED BY THE OFFICE.
  YOU HAVE THE RIGHT TO FINANCIAL TRANSPARENCY INCLUDING ACCESS TO BUDG-
ETARY  INFORMATION  OF  THE  RESIDENCE  INCLUDING  INDIVIDUAL  EXPENSES,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO BE INFORMED REGARDING ANY STAFFING CHANGES.
  YOU HAVE THE RIGHT TO BE GIVEN CLEAR, UP TO DATE, UNDERSTANDABLE,  AND
HONEST  INFORMATION  ABOUT  THE  SYSTEM OF CARE AND SERVICES FOR PERSONS
WITH DEVELOPMENTAL DISABILITIES, INCLUDING BUT NOT  LIMITED  TO  MANAGED
CARE.
  YOU  HAVE  THE  RIGHT  TO BE ADVISED IN WRITING OF ANY LAWS, RULES, OR
REGULATIONS THAT APPLY TO A QUALIFIED  FAMILY  MEMBER'S  AND  GUARDIAN'S
ABILITY  TO  ACCESS  INFORMATION  OR  PARTICIPATE IN DECISIONS ABOUT THE
INDIVIDUAL'S LIFE, INCLUDING BUT NOT LIMITED  TO,  GUARDIANSHIP  ISSUES,
AND  ACCESS  TO  RECORDS,  REPORTS,  PLANS  OF CARE, AND OTHER PERTINENT
INFORMATION.
  FOR PURPOSES OF MEDICAID WAIVERS OBTAINED BY THE STATE:
  YOU HAVE THE RIGHT TO CHOOSE A CARE COORDINATOR.
  YOU HAVE THE RIGHT TO RECEIVE INFORMATION NECESSARY TO  MAKE  INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE COORDINATION OF THE INDIVID-
UAL.
  YOU HAVE THE RIGHT TO INDEPENDENT ADVOCATES.
  YOU HAVE THE RIGHT TO BE NOTIFIED IN WRITING ABOUT ALL MANDATED PROCE-
DURES IF QUALIFIED FAMILY MEMBERS OR GUARDIANS NEED TO CHALLENGE A DECI-
SION.

S. 5223--B                          3

  ALL  THE  ABOVE  ARE YOUR RIGHTS. NOTHING IN THIS BILL OF RIGHTS SHALL
LIMIT ANY OTHER ACTION OR RELIEF PERMITTED BY LAW.  IF THE  PROVIDER  OR
RESIDENTIAL  FACILITY DOES NOT HONOR THESE RIGHTS YOU MAY PURSUE HELP BY
CONTACTING THE NEW YORK STATE  DEPARTMENT  OF  HEALTH,  THE  OFFICE  FOR
PEOPLE  WITH DEVELOPMENTAL DISABILITIES OR BY CONTACTING THE RESIDENTIAL
FACILITY OR THE PROVIDER OF SERVICES.
  (E) THE COMMISSIONER SHALL ESTABLISH A  PUBLIC  EDUCATION  PROGRAM  TO
DISSEMINATE  INFORMATION  REGARDING IMPLEMENTATION OF THIS SECTION. SUCH
INFORMATION SHALL INCLUDE, BUT NOT BE LIMITED  TO,  PUBLICATION  OF  THE
FAMILY  BILL  OF RIGHTS AS SPECIFIED IN SUBDIVISION (D) OF THIS SECTION;
PUBLICATION OF THE RIGHTS OF QUALIFIED FAMILY MEMBERS AND GUARDIANS OF A
PERSON RECEIVING SERVICES FROM A PROVIDER OR IN A  RESIDENTIAL  FACILITY
OPERATED,  LICENSED, OR FUNDED BY THE OFFICE; AND PUBLICATION OF CERTAIN
PROVISIONS RELATING TO MEDICAID WAIVERS OBTAINED BY THE STATE.
  S 2. This act shall take effect immediately.

S5223C - Bill Details

See Assembly Version of this Bill:
A7312D
Current Committee:
Law Section:
Mental Hygiene Law
Laws Affected:
Add §13.04, Ment Hyg L

S5223C - Bill Texts

view 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.

view sponsor memo
BILL NUMBER:S5223C

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
developmental disabilities that reside in residences certified or
approved by the office for people with developmental disabilities

PURPOSE:

The bill creates a bill of rights for family members and guardians of
people with developmental disabilities.

SUMMARY OF PROVISIONS:

Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a bill of rights for qualified family members
and guardians of individuals with developmental disabilities who
receives services from providers who are certified or approved by the
office.

The bill of rights enumerates several rights that family members and
guardians should have in regards to access information. These rights
include: access to fire safety plans, meal menus, notification of an
event that directly impacts the health and safety of an individual,
the right to receive information necessary to make informed decisions
about the care of an individual, the right to have meaningful
participation and input into the plan of care and to be advised in
writing of any law, regulations or rules that apply to a family member
or guardian's ability to access information or participate in
decisions about the individual's life.

The bill also respects that an individual with disabilities may want
to limit the involvement of certain family members by qualifying that
rights to access to information, coordination of care etc, will be
limited if the individual with developmental disabilities has stated
that they do not wish a family member to be involved.

Access to information will also be in compliance with federal and
state confidentiality protections to protect other individuals with
developmental disabilities health information. A qualified family
member includes parents, adult siblings, spouse, and the adult child
of an individual with developmental disabilities.

Section 2 is the effective date.

JUSTIFICATION:

Family advocates have expressed their growing frustrations with the
lack of access to information regarding the care of a loved one
residing in an residence operated by OPWDD. Parents, family members
and guardians are frustrated by the lack of family input on placement
decisions and by the lack of notification of or access to, events and
information regarding the health and safety of their family member.
As the New York State moves towards a managed care system, parents are
very concerned about what this will mean for their children with
developmental disabilities They are concerned that this transition
will result in a lack of communication with, and transparency from,


the managed care entities. This is why 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
to have access to any information that is needed to make an informed
decision. The rights enumerated in this bill will ensure that family
members and guardians have access to important information about the
care being provided for their family member with a developmental
disability.

LEGISLATIVE HISTORY:

New Bill.

FISCAL IMPLICATIONS:

To be determined.

EFFECTIVE DATE:

This act shall take effect immediately.

view full text
download pdf
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 5223--C

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                              May 14, 2013
                               ___________

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 -- reported  favorably  from  said  committee  and
  committed  to  the  Committee on Finance -- committee discharged, bill
  amended, ordered reprinted as amended and recommitted to said  commit-
  tee  --  committee  discharged,  bill  amended,  ordered  reprinted as
  amended and recommitted  to  said  committee  --  recommitted  to  the
  Committee  on  Mental Health and Developmental Disabilities in accord-
  ance with Senate Rule 6,  sec.  8  --  reported  favorably  from  said
  committee  and  committed  to  the  Committee  on Finance -- committee
  discharged, bill amended, ordered reprinted as amended and recommitted
  to said committee

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:
S 13.04 FAMILY BILL OF RIGHTS.
  (A) THE PRINCIPLES ENUNCIATED IN SUBDIVISION (D) OF THIS  SECTION  ARE
DECLARED  TO BE THE PUBLIC POLICY OF THE STATE AND A COPY OF SUCH STATE-
MENT OF RIGHTS SHALL BE POSTED CONSPICUOUSLY IN A PUBLIC PLACE  IN  EACH
PROVIDER  OF  SERVICES AND RESIDENTIAL FACILITY CERTIFIED OR APPROVED BY
THE OFFICE. FOR PURPOSES OF  THIS  SECTION,  "QUALIFIED  FAMILY  MEMBER"
MEANS A PARENT, SPOUSE, ADULT SIBLING OR AN ADULT CHILD OF THE RESIDENT.
  (B)  THE  COMMISSIONER  SHALL  MAKE  AVAILABLE  TO  EVERY  PROVIDER OF
SERVICES AND RESIDENCE OPERATED, LICENSED OR FUNDED BY  THE  OFFICE,  ON
THE  OFFICE'S  WEBSITE  A  COPY  OF  THE STATEMENT OF RIGHTS PROVIDED IN
SUBDIVISION (D) OF THIS SECTION IN ENGLISH AND  THE  TOP  SIX  LANGUAGES

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10708-17-4

S. 5223--C                          2

OTHER THAN ENGLISH SPOKEN IN THE STATE ACCORDING TO THE LATEST AVAILABLE
DATA FROM THE U.S. BUREAU OF CENSUS, AND SHALL ADOPT ANY RULES AND REGU-
LATIONS NECESSARY TO ENSURE THAT SUCH QUALIFIED FAMILY MEMBERS AND GUAR-
DIANS ARE TREATED IN ACCORDANCE WITH THE PROVISIONS OF SUCH STATEMENT.
  (C)  SUCH  RIGHTS SHALL APPLY TO FAMILY MEMBERS DEFINED IN SUBDIVISION
(A) OF THIS SECTION PROVIDED HOWEVER, SUCH RIGHTS SHALL NOT APPLY IF  AN
INDIVIDUAL  WITH DEVELOPMENTAL DISABILITIES HAS SPECIFICALLY STATED THAT
SUCH FAMILY MEMBERS SHALL NOT HAVE ACCESS TO ANY  PERSONAL  INFORMATION,
BE  INVOLVED IN ANY CARE PLANNING OR COORDINATION, OR BE INVOLVED IN ANY
HEALTH CARE DECISIONS.
  (D) THE STATEMENT OF RIGHTS SHALL CONSIST OF THE FOLLOWING:
  "FAMILY BILL OF RIGHTS"
  QUALIFIED FAMILY MEMBERS AND GUARDIANS SHALL HAVE THE FOLLOWING RIGHTS
IN REGARDS TO AN INDIVIDUAL RECEIVING SERVICES THROUGH PROGRAMS, INCLUD-
ING, BUT NOT  LIMITED  TO,  RESIDENTIAL  SERVICES,  THAT  ARE  OPERATED,
LICENSED OR FUNDED BY THE OFFICE.  THESE RIGHTS SHALL INCLUDE:
  YOU HAVE THE RIGHT TO BE TREATED WITH CONSIDERATION AND RESPECT.
  YOU  HAVE  THE  RIGHT TO HAVE ACCESS TO A RESIDENCE'S FIRE SAFETY PLAN
AND ANY INFORMATION REGARDING A RESIDENCE'S PASSAGE OR  FAILURE  OF  ANY
FIRE SAFETY DRILLS CONDUCTED BY THE RESIDENCE AND THE OFFICE.
  YOU  HAVE  THE RIGHT TO NOTIFICATION WITHIN A REASONABLE TIME FRAME OF
ANY EVENT THAT DIRECTLY IMPACTS THE HEALTH AND SAFETY OF THE INDIVIDUAL,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO INFORMATION REGARDING THE  HEALTH
AND  SAFETY  OF THE INDIVIDUAL, CONSISTENT WITH FEDERAL AND STATE CONFI-
DENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO HAVE ACCESS TO A RESIDENCE'S FOOD MENUS.
  YOU HAVE THE RIGHT FOR A QUALIFIED FAMILY MEMBER  OR  GUARDIAN  TO  BE
ABLE TO HAVE UNANNOUNCED VISITS.
  YOU  HAVE  THE RIGHT TO RECEIVE INFORMATION NECESSARY TO MAKE INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE OF THE INDIVIDUAL.
  YOU HAVE THE RIGHT TO HAVE MEANINGFUL PARTICIPATION  AND  INPUT  INTO,
AND  ONGOING REVIEW AND INVOLVEMENT WITH, THE INDIVIDUAL'S PLAN OF CARE,
INCLUDING BUT NOT LIMITED TO ANY DECISION REGARDING  APPROPRIATE  PLACE-
MENT OR TRANSFER OF AN INDIVIDUAL WITH DEVELOPMENTAL DISABILITIES WITHIN
A RESIDENCE OPERATED, LICENSED OR FUNDED BY THE OFFICE.
  YOU HAVE THE RIGHT TO FINANCIAL TRANSPARENCY INCLUDING ACCESS TO BUDG-
ETARY  INFORMATION  OF  THE  RESIDENCE  INCLUDING  INDIVIDUAL  EXPENSES,
CONSISTENT WITH FEDERAL AND STATE CONFIDENTIALITY PROTECTIONS.
  YOU HAVE THE RIGHT TO BE INFORMED REGARDING ANY STAFFING CHANGES.
  YOU HAVE THE RIGHT TO BE GIVEN CLEAR, UP TO DATE, UNDERSTANDABLE,  AND
HONEST  INFORMATION  ABOUT  THE  SYSTEM OF CARE AND SERVICES FOR PERSONS
WITH DEVELOPMENTAL DISABILITIES, INCLUDING BUT NOT  LIMITED  TO  MANAGED
CARE.
  YOU  HAVE  THE  RIGHT  TO BE ADVISED IN WRITING OF ANY LAWS, RULES, OR
REGULATIONS THAT APPLY TO A QUALIFIED  FAMILY  MEMBER'S  AND  GUARDIAN'S
ABILITY  TO  ACCESS  INFORMATION  OR  PARTICIPATE IN DECISIONS ABOUT THE
INDIVIDUAL'S LIFE, INCLUDING BUT NOT LIMITED  TO,  GUARDIANSHIP  ISSUES,
AND  ACCESS  TO  RECORDS,  REPORTS,  PLANS  OF CARE, AND OTHER PERTINENT
INFORMATION.
  FOR PURPOSES OF MEDICAID WAIVERS OBTAINED BY THE STATE:
  YOU HAVE THE RIGHT TO CHOOSE A CARE COORDINATOR.
  YOU HAVE THE RIGHT TO RECEIVE INFORMATION NECESSARY TO  MAKE  INFORMED
DECISIONS, WHEN APPROPRIATE, ABOUT THE CARE COORDINATION OF THE INDIVID-
UAL.
  YOU HAVE THE RIGHT TO INDEPENDENT ADVOCATES.

S. 5223--C                          3

  YOU HAVE THE RIGHT TO BE NOTIFIED IN WRITING ABOUT ALL MANDATED PROCE-
DURES IF QUALIFIED FAMILY MEMBERS OR GUARDIANS NEED TO CHALLENGE A DECI-
SION.
  ALL  THE  ABOVE  ARE YOUR RIGHTS. NOTHING IN THIS BILL OF RIGHTS SHALL
LIMIT ANY OTHER ACTION OR RELIEF PERMITTED BY LAW.  IF THE  PROVIDER  OR
RESIDENTIAL  FACILITY DOES NOT HONOR THESE RIGHTS YOU MAY PURSUE HELP BY
CONTACTING THE NEW YORK STATE  DEPARTMENT  OF  HEALTH,  THE  OFFICE  FOR
PEOPLE  WITH DEVELOPMENTAL DISABILITIES OR BY CONTACTING THE RESIDENTIAL
FACILITY OR THE PROVIDER OF SERVICES.
  (E) THE COMMISSIONER SHALL ESTABLISH A  PUBLIC  EDUCATION  PROGRAM  TO
DISSEMINATE  INFORMATION  REGARDING IMPLEMENTATION OF THIS SECTION. SUCH
INFORMATION SHALL INCLUDE, BUT NOT BE LIMITED  TO,  PUBLICATION  OF  THE
FAMILY  BILL  OF RIGHTS AS SPECIFIED IN SUBDIVISION (D) OF THIS SECTION;
PUBLICATION OF THE RIGHTS OF QUALIFIED FAMILY MEMBERS AND GUARDIANS OF A
PERSON RECEIVING SERVICES FROM A PROVIDER OR IN A  RESIDENTIAL  FACILITY
OPERATED,  LICENSED, OR FUNDED BY THE OFFICE; AND PUBLICATION OF CERTAIN
PROVISIONS RELATING TO MEDICAID WAIVERS OBTAINED BY THE STATE.
  S 2. This act shall take effect immediately.

S5223D (ACTIVE) - Bill Details

See Assembly Version of this Bill:
A7312D
Current Committee:
Law Section:
Mental Hygiene Law
Laws Affected:
Add §13.04, Ment Hyg L

S5223D (ACTIVE) - Bill Texts

view 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.

view sponsor memo
BILL NUMBER:S5223D

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
developmental disabilities that reside in residences certified or
approved by the office for people with developmental disabilities

PURPOSE OF BILL:

The bill creates a bill of rights for family members and guardians of
people with developmental disabilities.

SUMMARY OF SPECIFIC PROVISIONS:

Section 1 of the bill amends the mental hygiene law by adding a new
section 13.04 to create a bill of rights for qualified family members
and guardians of individuals with developmental disabilities who
receive services from providers who are certified or approved by the
office for people with developmental disabilities (OPWDD).

The bill of rights enumerates several rights of family members and
guardians to access information. These rights include: access to a
residence's fire safety plan, meal menus, notification of an event
that directly impacts the health and safety of an individual, the
right to receive information necessary to make informed decisions
about the care of an individual, the right to have meaningful
participation and input into the plan of care and the right to be
advised in writing of any laws, regulations or rules that apply to a
family member or guardian's ability to access information or
participate in decisions about the individual's life.

The bill also respects that an individual with disabilities may want
to limit the involvement of a family member by qualifying, that rights
to access to information, coordination of care, etc. will be limited
if the individual with disabilities has stated that they do not wish a
family member to be involved.

Access to information will also be in compliance with federal and
state confidentiality protections to protect the health information of
other individuals with developmental disabilities.

A qualified family member includes a parent, spouse, adult sibling,
and the adult child of an individual with disabilities.

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 approved by OPWDD. Parents, family members and
guardians are frustrated by the lack of family input on placement
decisions, and the lack of notification or access to events and
information regarding 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


developmental 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 enumerated in this bill
will ensure that family members and guardians have access to important
information about the care being provided for their developmentally
disabled family member.

LEGISLATIVE HISTORY:

New bill

FISCAL IMPLICATIONS:

To be determined.

EFFECTIVE DATE:

This act shall take effect immediately.

view full text
download pdf
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                 5223--D

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                              May 14, 2013
                               ___________

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 -- reported  favorably  from  said  committee  and
  committed  to  the  Committee on Finance -- committee discharged, bill
  amended, ordered reprinted as amended and recommitted to said  commit-
  tee  --  committee  discharged,  bill  amended,  ordered  reprinted as
  amended and recommitted  to  said  committee  --  recommitted  to  the
  Committee  on  Mental Health and Developmental Disabilities in accord-
  ance with Senate Rule 6,  sec.  8  --  reported  favorably  from  said
  committee  and  committed  to  the  Committee  on Finance -- committee
  discharged, bill amended, ordered reprinted as amended and recommitted
  to said committee  --  committee  discharged,  bill  amended,  ordered
  reprinted as amended and recommitted to said committee

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:
S 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

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD10708-22-4

S. 5223--D                          2

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"
  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-

S. 5223--D                          3

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.
  (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 PROVIDER SHALL CONSPICUOUSLY POST  A  COPY  OF  THE  BILL  OF
RIGHTS  AND  PRIVILEGES  IN  A  PUBLIC  PLACE AT THE LOCATIONS WHERE THE
PROVIDER PROVIDES SERVICES.
  (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.
  S 2. This act shall take effect immediately.

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