Individuals with Intellectual or Developmental Disabilities

The New York State Office for People With Developmental Disabilities (OPWDD) is responsible for coordinating services for New Yorkers with intellectual or developmental disabilities (I/DD), including cerebral palsy, Down syndrome, autism spectrum disorders, Prader-Willi syndrome and other neurological impairments. It provides services directly and through a network of approximately 500 nonprofit service providing agencies, with about 80 percent of services provided by the private nonprofits and 20 percent provided by state-run services. See Guidance for OPWDD Service Providers and Families on the Novel Coronavirus.

To learn more about how to reach those who work to meet the needs of our vulnerable population with I/DD, review what to do when there is urgency to complete the 1750-b process and MOLST.

Completing MOLST

Individuals with I/DD can have a MOLST form completed.

• Individuals who have capacity can work with their physician or NP or PA, as of June 17, 2020 to complete a MOLST as described for adult patients. The DOH Checklist #1 is used.
• If an individual with I/DD lacks capacity and has a properly completed health care proxy, the health care agent works with the physician, NP, or PA, as of June 17, 2020, to complete MOLST as described for adult patients. A properly completed health care proxy must include the assessment of capacity of the individual to choose a health care agent and appropriate witnessing. Please see special considerations and FAQs, for proper completion of a health care proxy. The DOH Checklist #2 is used.
• Individuals with I/DD who lack capacity to make their own health care decisions and do not have a health care proxy have special requirements for completing a MOLST. The OPWDD Checklist must be completed first. The medical decision-maker is the Surrogate identified per the Surrogate Court Procedure Act § 1750-b.

The identified medical decision-maker should review the MOLST Form and the specific web pages that identify the medical orders included on the MOLST. If there is a decision to withhold or withdraw life-sustaining treatment, special attention should be paid to resuscitation preferences, respiratory support and future hospitalization/transfer, considering COVID-19.

Special Requirements for MOLST: I/DD and Lack Capacity

Surrogate Court Procedure Act § 1750-b outlines special requirements for individuals with I/DD who lack capacity and do not have a health care proxy. When completing the MOLST for individuals with I/DD who lack capacity to make their own health care decisions and do not have a health care proxy, keep in mind:

• The law governing the decision-making process differs for individuals with I/DD. Surrogate’s Court Procedure Act (SCPA) Section 1750-b must be followed when making a decision for an individual with I/DD who lacks capacity and does not have a health care proxy.
• MOLST may only be signed by a physician, not a nurse practitioner or physician assistant.
• The OPWDD MOLST Legal Requirements Checklist For People With Developmental Disabilities outlines the 1750-b process, including notification of certain parties and resolution of any objections, is mandatory prior to completion of MOLST. Review the OPWDD Checklist.
• The individual’s lack of capacity to make health care decisions must be confirmed. Either the attending physician or the concurring physician or licensed psychologist must: (a) be employed by a DDSO; or (b) have been employed for at least 2 years in a facility or program operated, licensed or authorized by OPWDD; or (c) have been approved by the commissioner of OPWDD as either possessing specialized training or have 3 years experience in providing services to individuals with DD. If you are having difficulty locating the appropriate professional to determine capacity, contact your local DDSO.
• The checklist should be completed when an authorized surrogate makes a decision to withhold or withdraw life sustaining treatment (LST) from an individual with I/DD. There are specific medical criteria, included in Step 4 of the checklist. The individual’s medical condition must meet the specified medical criteria at the time the request to withhold or withdraw treatment is made.
• Trials- whether or not a new checklist is required following an unsuccessful trial of LST depends on the parameters of the trial, as specified in Step 2 of the checklist. If Step 2 of the checklist has provided that a trial for LST is to end after a specific period of time or the occurrence of a specific event, it may not be necessary to complete a new checklist following the trial. However, if a trial period is open ended, and the authorized surrogate subsequently decides to request withdraw of the LST, a new checklist would be required.
• The checklist and 1750-b process apply to individuals with I/DD, regardless of their age or residential setting.

Please review additional details on the Ethical & Legal Requirements for Patients with Developmental Disabilities.

OPWDD MOLST Legal Requirements Checklist For People With Developmental Disabilities

Trial

A trial of life-sustaining treatment may be ordered if the physician agrees it is medically appropriate. A trial is used to determine if there is benefit to the patient and is based on the patient’s current goals for care. If a life-sustaining treatment is started but turns out to not be helpful and does not meet the patient’s goals for care, the treatment can be stopped.

Being specific about the goals and details of the trial in Other Instructions is particularly important for this population.

When There is Urgency to Complete the 1750-b Process & MOLST

To assist physicians during the COVID-19 pandemic crisis, please see how to reach those who work to meet the needs of our vulnerable population with I/DD. The information is accurate as of April 30, 2020 and will be updated as needed.

MHLS

The Mental Hygiene Legal Service (MHLS) provides legal services, advice and assistance to persons receiving care at inpatient and community-based facilities for the mentally disabled.

To reach an MHLS attorney urgently, please review the Surrogate Decision Making/SCPA 1750-b Statewide Contact List. Up-to-date contact information is included.

The link is available on the State of New York Supreme Court, Appellate Division Third Judicial Department MHLS.

We are grateful to the many MHLS attorneys who are willing to respond to end of life matters after hours and on weekends on a voluntary basis.

DDSO

To reach a clinical psychologist or physician who can provide needed capacity determination under SCPA 1750-b, OPWDD has issued the following guidance on Health Care Decisions Act (SPCA 1750-b) and MOLST.

As a general rule, this concurring opinion should be provided by the individual’s residential provider agency.  In the event that the provider agency is unable to provide the concurring opinion and the hospital does not have a clinician who meets the necessary criteria, the hospital should call the 24-hour OPWDD hotline at (855) 696-7933.

• Taconic Region (Greene, Columbia, Ulster, Dutchess and Putnam) Daytime until 4:30pm: 845-471-9226 After Hours & Weekends: 833-605-9246

A clinician with at least 3 years of experience in serving people with I/DD can apply for approval by the Commissioner of OPWDD by completing and submitting the Clinician Application for OPWDD Approval.

Consumer Advisory Board, Willowbrook Class (CAB)

Call 718-477-8800.  This is a HIPAA-secure phone line that accepts messages and is attended 24/7; please leave a clear concise message indicating name of Willowbrook class member and caller’s contact information including medical facility, name and phone number (including area code) and the nature of the request being made.

Surrogate Decision Making Committee (SDMC) MHL Article 80

SDMC is working to provide volunteers for video to accommodate remote MOLST/SDMC cases on nights and weekends, so long as the SDMC is provided with video access to the client.

DDSO Notifications

Contact your local DDSO.

MHLS

The Mental Hygiene Legal Service (MHLS) provides legal services, advice and assistance to persons receiving care or alleged to be in need of care at inpatient and community-based facilities for individuals with mental disabilities. Created in 1964 and organized under Mental Hygiene Law article 47, MHLS represents such persons in judicial and administrative proceedings concerning admission, retention, transfer, treatment, and guardianship. In addition to handling judicial proceedings, MHLS provides advice and representation regarding standards of care and other matters affecting the civil liberties of persons receiving care at facilities for individuals with mental disabilities.

With respect to health care decision making, the Mental Hygiene Legal Service must receive notice of decisions by legally authorized surrogates who provide consent to withhold or withdraw life sustaining treatment for residents who lack capacity living in or transferred from facilities operated or licensed by the Office for People With Developmental Disabilities (OPWDD). Such facilities include developmental centers, intermediate care facilities (ICFs), and Individualized Residential Alternatives (IRAs).

MHLS operates out of four regional directors’ offices and numerous satellite offices at or near where clients of the agency are served. Attached is a document identifying the MHLS representative for each County in New York State.

SDMC

The Surrogate Decision-Making Committee (SDMC) program is an alternative to the court system and is authorized to provide consent for non-emergency major medical treatment and end-of-life care decisions for people who qualify. The SDMC consists of volunteer panels who make the decision, providing for quicker, more accessible, cost-free, and personalized decision on behalf of individuals with disabilities.

SDMC was granted jurisdiction to provide end of life care decisions for individuals with intellectual or developmental disabilities through an amendment to the Health Care Decisions Act in 2008. The decisions that can be made by the SDMC include the withdrawal or withholding of life sustaining treatment for persons with an intellectual or developmental disability. Learn more about SDMC.

A SDMC panel is made up of volunteers appointed by the Justice Center who serve their home communities throughout New York State. A hearing panel must consist of at least three, and no more than four members. The panels are made up of one member from each of the following categories:

• NYS Licensed Health Care Professional (e.g. physician, nurse, clinical social worker)
• NYS Attorney
• Former patients or family members of individuals with mental disabilities
• Advocate for persons with mental disabilities (e.g. persons with recognized expertise or demonstrated interest in the care and treatment or individuals with behavioral health or developmental disabilities)

Consumer Advisory Board, Willowbrook Class

The Consumer Advisory Board, Willowbrook Class, (the “CAB” or the “Willowbrook CAB”) was established by court order pursuant to the provision of paragraphs S and W of Appendix A to the Final Judgement entered on May 5, 1975 in the Willowbrook litigation (reported at 393 F. Supp. 715 (E.D.N.Y. 1975). Neither the members of the Board of the Consumer Advisory Board nor the staff of the Consumer Advisory Board are employees of New York State or the New York State Office for People with Developmental Disabilities.

The mandate of the Consumer Advisory Board is to act in loco parentis and to provide all necessary and appropriate representation and advocacy services to all Willowbrook Class Members for as long as any such class member shall live.  See Permanent Injunction ¶ 7 and Appendix H at ¶1.  Generally speaking, this means that the CAB advocates for and represents Willowbrook class members with respect to programming and evaluation, as well as closely monitoring and coordinating medical services and treatment with class members’ interdisciplinary plans.

The CAB has several levels of authority to sign consent forms and make health care determinations for Willowbrook class members.

• CAB as Health Care Agent
  • Competent Willowbrook class members are entitled to execute health care proxies under New York State Public Health Law Article 29-C, §§ 2980 et seq. If the CAB is named as a health care agent for a Willowbrook class member, the CAB has the authority to make all health care decisions for the class member, including the decision to remove or provide life-sustaining treatment, if such instructions are included in the health care proxy. “Health care” means any treatment, service or procedure to diagnose or treat a person’s physical or mental condition, including but not limited to consent to or removal of all nature of life-sustaining treatment.
• CAB as Guardian:
  • With respect to Willowbrook class members for whom the CAB serves as guardian either pursuant to M.H.L. Article 81 (N.Y. Mental Health Law §81.22.8 and N.Y. Public Health Law §2994-d.1) or S.C.P.A. Article 17 (S.C.P.A. § 1750-b(1)(a)), the CAB is empowered to make all health care decisions for the class member, including the decision to remove or provide life-sustaining treatment.
• CAB acting pursuant to 14 N.Y.C.R.R. 633.11 relating to Professional Medical Treatment [not including End-of-Life Decisions]:
  • With respect to Willowbrook class members fully represented by CAB, the CAB is included in the list of surrogates codified at 14 N.Y. Code Rules & Regs. §633.11(a)(1)(iii)(b)(7) and as such, is empowered to make and consent to all health care decisions, which includes consenting to life-sustaining treatment (14 NYCRR §633.11 provides surrogate decision-making rules for persons who are “residents of a facility operated or certified by OPWDD. Such persons, when hospitalized, are still residents of OPWDD facilities and subject to this regulation). Accordingly, the CAB is permitted to provide informed consent to both routine and proposed professional medical treatment. Proposed professional medical treatment, sometimes referred to as major medical treatment, includes surgical procedures, general anesthesia and other intrusive procedures whether those procedures are performed for diagnostic or treatment purposes. 14 N.Y. Code Rules & Regs. §633.99(dk) defines major medical treatment as “professional medical treatment” or “medical, dental, surgical or diagnostic intervention or procedure in which a general anesthetic is used or which involves a significant invasion of bodily integrity requiring an incision or producing substantial pain, discomfort, debilitation or having a significant recovery period, or any professional diagnosis or treatment to which informed consent is required by law.”  (This includes HIV-testing pursuant to N.Y. State Public Health Law Article 27-F, § 2781).
• CAB acting as “deemed” Guardian pursuant to S.C.P.A. §1750-b with respect to End-of-Life Decisions:
  • With respect to Willowbrook class members fully represented by CAB, the CAB is empowered to make and consent to all health care decisions relating to withdraw or withhold life-sustaining treatment. S.C.P.A. § 1750-b(1)(a). As noted above, health care decisions relating to withdraw or withhold life-sustaining treatment includes both DNR and DNI orders, as well as comfort care measures and the variety of other palliative options available to individuals in the end-of-life decision-making context.
• CAB as “Close Friend” under Family Health Care Decisions Act:
  • with respect to Willowbrook class members who reside in the “community” [i.e. not in an OPWDD-certified setting], including a nursing home setting, and who are either fully or co-represented by the CAB [and the individual has no surrogate in higher priority], the CAB has the authority to make all health care decisions for the class member, including the decision to remove or provide life-sustaining treatment under the Family Health Care Decisions Act. NOTE:  for Willowbrook class members residing in the “community,” NY SCPA §1750-b is inapplicable because its non-court process for authorizing the CAB to act as a “guardian” is limited to decisions to withdraw or withhold life-sustaining treatment. See §1750-b.1(a). When a health care decision for the patient cannot be made pursuant to the SCPA or Mental Hygiene Law or regulations, the FHCDA becomes applicable. NY PHL §2994-b.4. Accordingly, the FHCDA becomes applicable, and a FHCDA surrogate can consent to such treatment per PHL §2994-d.