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

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.