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

Summary of specific 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 appropriate, about the individual's care and care coordination.

5. Visit unannounced.

6. Choose a care coordinator.

7. Financial transparency, consistent with federal and state confidentiality 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 privileges 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 provider'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 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 and privileges enumerated in this bill will ensure that family members and legal representatives have access to important information about the care being provided for their developmentally disabled family member.

Legislative history

2013-14: A.7312-D passed Assembly; same as S.5223-D referred to mental health and developmental disabilities

Fiscal implications

To be determined.

Effective date

This act shall take effect immediately.