1. Statutory authority:

a. The New York State Office of Mental Retardation and Developmental Disabilities' (OMRDD) statutory responsibility to assure and encourage the development of programs and services in the area of care, treatment, rehabilitation, education and training of persons with mental retardation and developmental disabilities, as stated in the New York State Mental Hygiene Law Section 13.07.

b. OMRDD's authority to adopt rules and regulations necessary and proper to implement any matter under its jurisdiction as stated in the New York State Mental Hygiene Law Section 13.09(b).

c. OMRDD's authority under the New York State Surrogate's Court Procedure Act Section 1750-b and Chapter 105 of the Laws of 2007 to promulgate regulations to implement the statutory provisions.

2. Legislative objectives: These proposed amendments further the legislative objectives embodied in Chapter 105 of the Laws of 2007. This new law mandates that OMRDD revise its regulations, in consultation with parents, advocates, and family members of persons with developmental disabilities, to include a prioritized list of family members who may be qualified to make decisions to withhold or withdraw life-sustaining treatment on behalf of a person with developmental disabilities who does not have the capacity to make such decisions and for whom no guardian has been appointed pursuant to Article 1750 or 1750-a of the Surrogate's Court Procedure Act.

3. Needs and benefits: The Health Care Decisions Act (HCDA) authorizes court appointed guardians under Article 17-A of the Surrogate's Court Procedure Act to make a decision to withhold or withdraw life-sustaining treatment for persons with developmental disabilities who do not have the capacity to do so themselves. This statute does not, however, cover the majority of persons with developmental disabilities who often do not have the capacity to make such decisions and who do not have such guardians appointed to act on their behalf.

Chapter 105 of the Laws of 2007 requires OMRDD to promulgate regulations that address this issue. In the absence of the proposed regulations and in the face of an impending end-of-life crisis, the families of persons with developmental disabilities must often scramble for guardianship to avoid helplessly watching their loved ones suffer a needlessly prolonged agony. Often, they cannot obtain — or afford — guardianship in time to prevent needless suffering. The new legislation and OMRDD's proposed regulations will enhance and safeguard the exercise of the constitutional rights of persons with mental retardation to refuse life-sustaining treatment by enabling certain qualified, non-guardian, family members with a significant and ongoing involvement in such a person's life to act as surrogates within the confines of the narrowly defined circumstance. Furthermore, when the decision maker is a non-guardian family member, as qualified by the law and the proposed regulations, the oversight accorded to a decision concerning life-sustaining care is in no way diminished and is subject to exactly the same rigorous standards and safeguards as a decision by a court appointed guardian.

4. Costs:

a. Costs to the Agency and to the State and its local governments: There will be no costs to the OMRDD, the State or its local governments. Existing agency resources will be utilized.

b. Costs to private regulated parties: There will be no additional costs and no initial capital investment costs nor initial non-capital expenses as a result of the proposed regulations. There will be no additional costs incurred by OMRDD or the not-for-profit corporations authorized by OMRDD to provide services to persons with developmental disabilities in New York State. Families of persons with developmental disabilities will be spared the sometimes burdensome legal costs associated with becoming guardians, as well as the hardship and travail of petitioning the courts in what are already difficult and painful circumstances.

5. Local government mandates: There are no new requirements imposed by the rule on any county, city, town, village; or school, fire, or other special district.

6. Paperwork: There will be no new paperwork required by compliance with the proposed regulations.

7. Duplication: The proposed amendments do not duplicate any existing State or Federal requirements that are applicable to parties and the circumstances described above.

8. Alternatives: As discussed above, Chapter 105 of the Laws of 2007 requires OMRDD to develop and promulgate, in its regulations, a prioritized list of family members that may be qualified to make decisions concerning life-sustaining care on behalf of persons with developmental disabilities. Further, the sponsor's memorandum accompanying Chapter 105 indicates that the Legislature was aware of OMRDD's existing regulations governing major medical decisions made by family members on behalf of persons with developmental disabilities. Accordingly, the prioritized listing contained in the proposed regulations is an adaptation of the existing list applicable to major medical decisions. OMRDD decided to replicate applicable parts of this pre-existing listing without significant modification so as to minimize confusion.

In its outreach efforts, OMRDD shared a draft of the proposed amendments with NYSARC and the Commissioner's Advisory Council which includes in its membership parents, advocates and family members of persons with developmental disabilities. The draft regulations did not make mention of provisions of the HCDA which establish certain family members' right to object to decisions regarding the withholding or withdrawal of life-sustaining treatment. At the request of NYSARC, mention of these statutory provisions was added in the proposed regulations.

9. Federal standards: The proposed amendments do not exceed any minimum standards of the federal government for the same or similar subject areas.

10. Compliance schedule: OMRDD expects to adopt the proposed amendments as soon as possible within the time frames mandated by the State Administrative Procedure Act so as to enable the December 30, 2007 effective date required by Chapter 105 of the Laws of 2007. The proposed regulations do not require any new systemic compliance activities beyond what was already required by the Health Care Decisions Act passed in 2002.

A Regulatory Flexibility Analysis for Small Businesses and Local Governments is not being submitted because the amendments will not impose any adverse economic impact or significant reporting, recordkeeping or other compliance requirements on small businesses or local governments. This is because the amendments only make a mandated revision to OMRDD's regulations by establishing a prioritized list of family members who may be qualified to make decisions to withhold or withdraw life-sustaining treatment on behalf of a person with developmental disabilities who does not have the capacity to make such decisions and for whom no guardian has been appointed pursuant to Article 1750 or 1750-a of the Surrogate's Court Procedure Act.

As discussed more thoroughly in the Regulatory Impact Statement, the statutory authority in Chapter 105 of the Laws of 2007 only provides for a very narrowly defined regulatory amendment which is kept to a minimum, consistent with the legislation. There will be no new compliance activities beyond the processes that are already required by the Health Care Decisions Act.

A rural area flexibility analysis for these amendments is not being submitted because the proposed amendments will not impose any adverse economic impact on rural areas. This is because the amendments only make a mandated revision to OMRDD's regulations by establishing a prioritized list of family members who may be qualified to make decisions to withhold or withdraw life-sustaining treatment on behalf of a person with developmental disabilities who does not have the capacity to make such decisions and for whom no guardian has been appointed pursuant to Article 1750 or 1750-a of the Surrogate's Court Procedure Act. Chapter 105 of the Laws of 2007 requires that such a prioritized list be promulgated as an addition to OMRDD's regulations.

A Job Impact Statement for these amendments is not being submitted because it is apparent from the nature and purposes of the amendments that they will not have an adverse impact on jobs and employment opportunities. This is because the amendments only make a mandated revision to OMRDD's regulations by establishing a prioritized list of family members who may be qualified to make decisions to withhold or withdraw life-sustaining treatment on behalf of a person with developmental disabilities who does not have the capacity to make such decisions and for whom no guardian has been appointed pursuant to Article 1750 or 1750-a of the Surrogate's Court Procedure Act. Chapter 105 of the Laws of 2007 requires that such a prioritized list be promulgated as an addition to OMRDD's regulations.