What's happening
This bill establishes a Family Bill of Rights for guardians of people with developmental disabilities in certified New York residences.
Why it matters
Empowers family members and guardians. by granting them explicit rights to participate in care planning, receive timely information about their loved one’s health and safety, and access key facility information—potentially leading to greater transparency and advocacy for individuals with developmental disabilities.
Mandates increased transparency from service providers. , including giving families access to facility budgets, staffing changes, safety plans, and food menus, which could lead to stronger oversight and improved quality of care.
Enhances accountability and communication. , as facilities are required to post these rights prominently and provide them in multiple languages, while the state must educate the public and track implementation—potentially making it easier for families to understand and assert their rights.
Respects the autonomy of individuals with developmental disabilities. by allowing competent residents to limit a representative’s access to certain rights, ensuring that the bill balances family involvement with the individual’s own wishes and privacy.
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Who cares
Headline styles
Family Rights for Disability Care
Plain English, a few words. Used as the page title.
Sponsors
Senator · Senate District 62
1 Co-sponsor
History
- Referred to mental health and developmental disabilities
- Referred to mental health and developmental disabilities
Companion bill
The same bill in the other chamber. A bill becomes law when one version passes both houses and the governor signs it, so either number can carry it.
Family Rights for Disability Care
In Assembly Committee · Codes · Sponsor Thomas Abinanti
Full text
3 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
1157
2017-2018 Regular Sessions
IN SENATE
January 6, 2017
Introduced by Sen. ORTT -- read twice and ordered printed, and when printed to be committed to the Committee on Mental Health and Developmental 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 disabilities 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 Assembly, 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 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.
(c) In addition to all other rights and privileges under law, a qualified personal representative shall have the following rights and privileges set forth below (the "Family Bill of Rights and Privileges") with respect to their individual family members with developmental disabilities.
"Family Bill of Rights and Privileges"
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD03323-01-7
S. 1157 2
A qualified personal representative shall have the following generally-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 Medicaid 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 individual.
Nothing in this bill of rights and privileges shall limit any other right or privilege under law. If any residential facility or non-residential 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 contemporaneous manner, that such identified qualified personal representative shall not be afforded such specific right or privilege. Such determination 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. 1157 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 subdivision 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 commissioner 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.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
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 "Family Bill of Rights and Privileges" for qualified personal representatives of an individual 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 "Family Bill of Rights and Privileges" for qualified personal representatives of individuals with developmental disabilities who receive services from a covered provider.
Read the full memo (756 words)
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 2015-2016 S. 3634A/A. 424A; Passed Assembly
Fiscal implications
To be determined.
Effective date
This act shall take effect immediately.
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