End-of-Life Care: A guide for supporting older people with intellectual disabilities and their families.

Published 2000, NYSARC, Inc.


Programs, interventions, and services for supporting staff, individuals and families dealing with loss and grief.



Our quality of life can be improved by understanding that changes may occur in our lives due to the death of friends, loved ones and carers, by learning how to express our losses and by getting support from others. Some of the strategies that may help accomplish these goals are:

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Education about the End of Life

Educating people about death is as essential as educating them about transportation, sexuality or money management. Death education may be community-based instruction emphasizing experiential learning within the natural environment. An experiential death education curriculum includes field trips to area funeral homes, cemeteries and houses of worship and can be augmented by guest presentations from morticians, physicians and clergy. Behavior rehearsal allows people to practice public and private displays of grief, such as prayer or meditation, conduct at funeral services, and offering condolences to the next of kin. Learning of these bereavement behaviors can be enhanced if adults have the opportunity to practice within the natural environment of a house of worship, funeral home and cemetery.

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Advance Directives

Discussing advance directives with the family and the individual at planning meetings provides opportunities not only for advance planning but also for death education. Reviewing the individual’s and the family’s funeral and burial preferences, health care proxies and wills can promote participation and communication between the family, individual and staff in preparing and planning for the inevitable separation. This can be especially important for people with Down syndrome and Alzheimer’s disease, where their participation in planning must be obtained while they are able to participate.

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Staff, clergy and families can assist individuals in participating fully in the grief and mourning process and in all the social rituals and support that society offers when someone dies. The importance of inclusion is illustrated in this vignette:

ML was in her late twenties and carried herself with a direct bearing and rough swagger that on any given day fully displayed all her anger, confusion or frustration. In between, she also displayed all her joy, wonder and gratitude. When a worker at her group home died, a woman to whom she was very attached, it opened a rush of old memories and unhealed wounds regarding the death of her father eighteen years prior.

ML recalled being excluded by her mother from his funeral and burial because her parents were estranged at the time. Now she was preoccupied by her intense desire to visit his grave in order to say “good-bye” in person. A visit was scheduled. She dressed in her nicest clothes and brought a small bouquet paid for with her own money. When ML and the staff arrived they checked with the office and were directed to an older portion of the cemetery. They easily found the gravesite. ML refused to believe that was where her father was buried. There was no headstone or grave marker on the plot, in sharp contrast to all the other graves nearby. To her, no headstone meant no grave and she refused to leave the flowers on the plot.

The key to helping ML work through her bereavement was arranging a way for her to buy a simple grave marker with her own funds. ML took an active role in the selection process and helped compose the inscription for the grave site plaque. Once the marker was installed, another visit was scheduled.

Again ML put on her best clothes and brought flowers. Upon seeing it she beamed at the plaque with her father’s name and was openly proud of her act of caring for him in his death. She laid her flowers on the plot, told him her “good-bye” and offered her own prayers. We took a picture of her kneeling with the flowers next to the marker. She went home content, consoled, knowing that she could always visit her father.

Staff in this situation demonstrated sensitive grief work that was essential to this individual’s resolving and accepting the death of her father.

How Can Staff Ensure Inclusion and Support When an Individual Experiences a Death?

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Grief Counseling, Bereavement Services and Support Groups

Counseling for individuals, families and groups is a supportive response to their loss and grief. Grief counseling may be:

Counseling may be provided by an agency team, by individuals who are trained and assigned to do grief counseling (e.g., social workers, clergy, volunteers), or by staff of agencies that provide end-of-life care (e.g., hospice care or trained hospital staff).

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Staff Education

If staff are unprepared to deal with terminal illness and death, they will not permit grieving among the people in their care. Some of the goals of death education for staff are to:

Know yourself.

In addition to learning how to help individuals and families deal with these issues, staff often find that as a result of death education, they are better able to deal with their own issues of death, grief and bereavement. People who have not healed from a previous loss are hesitant to risk another.

Support groups for staff working with terminally ill individuals or grieving for an individual with whom they may have had a long established relationship are essential in preventing the emotional, psychological and spiritual numbness that result from being over stressed by frequent or unresolved losses. One of the ground rules of such a support group must be that staff are supported in grieving openly. These goals of such groups are to help people learn about the bereavement process, reinforce positive coping skills, to encourage expression of grief and to assess the need for additional support. The goals of such groups are to help people learn about the bereavement process, to reinforce positive coping skills, to encourage expression of grief and to assess the need for additional support.

The Links and Resources Section identifies many resources for developing staff orientation, education and support programs. Community resources for staff in-services include hospices, mental health departments, houses of worship, funeral homes, local colleges and Employee Assistance Programs (EAPs). There are also many educational films on dying, grief and bereavement, which are available through colleges, state film libraries or local mental health departments.

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Other Programs and Services

Some agencies have developed and implemented creative approaches to support individuals, families and staff:

To deal humanely with end-of-life issues, agencies need to initiate staff training and evaluation of policies, procedures, practices, rules, regulations and funding that impact end-of-life care. Such evaluation should serve as a starting point for agencies to institute workable, respectful practices to fulfill their mission of supporting individuals with developmental disabilities and their families. The following chapters provide information for training and for evaluation of end-of-life care.

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Advance Planning: Legal, Medical and Administrative



While information in this chapter is specific to New York, it could apply to other states/locales. The reader must obtain state-specific information.

Helping people to prepare for practical matters related to the end of one’s life is an act of care and compassion. However, one needs to work within the legal and regulatory guidelines as planning progresses. The following information has been compiled to help individuals, their families, and carers make informed decisions and personalized preparations. In this chapter is a wide range of information on preplanning, concerns of advance directives and DNR’s, organ donation procedures, burial rituals, funeral rites and financial concerns surrounding death and dying.

The intent of this information is to assist individuals in making informed preparations, while integrating the concerns of the individual, family and system of care. The material is general in nature. Please consult with an attorney and/or financial planner, and your medical care provider, before completing documents specific to your family circumstances.

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The process of making plans for the end of a life may begin at any point in the person’s life cycle. Apart from the stresses of an impending death, there are advantages to making preparations when a person is young or healthy. In fact, personal and practical matters alike may be addressed long before an individual becomes elderly or seriously ill. Examples of concerns are:

These are all questions that can be explored at any point in a person’s life. The preplanning process not only consists of exploring with the person their wishes, but may also entail legal issues such as advance directives, including living wills, Health Care Proxies and Do-Not-Resuscitate (DNR) orders. In fact, a person can have all three, a living will, Health Care Proxy and DNR order. The elements of the living will can be included in the Health Care Proxy.

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Supplemental Needs Trusts

Supplemental Needs Trusts (SNT) are an important part of planning for the current and future needs of individuals with developmental disabilities. They allow the person with the disability, referred to as the “beneficiary” of the trust, to purchase additional support and services that are not available through government programs. If the trust is created carefully and according to law, the funds therein can be accessed for those services without interrupting benefit programs. Inappropriate trusts, can, however effect an individual’s eligibility for Medicaid.

There are three basic forms of Supplemental Needs Trusts (SNT):

Each of these types of trusts has its particular legal requirements and skilled legal assistance should be sought before creating a trust or depositing funds in one. However, they provide a valuable tool in assisting families to provide additional services, beyond those provided by Medicaid and SSI, to a loved one with a disability. As such they are a vital part of any future care planning for such an individual.

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Advance Directives

Advance directives (except living wills), are legal documents which allow a person to leave orders about his/her health care in case s/he becomes unable to do so for his/herself. They are designed to help a person exercise his/her rights to make health care and medical decisions.

A person must be at least 18 years of age to complete an advance directive. An advance directive provides physicians, family members and friends with information on how a person feels about treatments such as, but not limited to, cardiopulmonary resuscitation (CPR), ventilators (breathing machines) and artificial feeding (tubes). Whether or not an advance directive is completed by a person is a person’s decision. It may not be pleasant to think about a serious illness or injury. However, with current medical technology, advance directives are more important than ever.

Health Care Proxy

In New York State, the best way to protect a person’s treatment wishes is to designate someone you trust to make these decisions on your behalf. The Health Care Proxy is codified in Public Health Law, Article 29C. The Health Care Proxy form is available from your health care provider. (See accompanying Resource Supplement). It must have the following: identification of the person writing the Health Care Proxy, identification of the person by name and a clear statement that the principal wants this person to make decisions for him or her. Health Care Proxies may state an expiration date. An individual writing a Health Care Proxy may include statements in the proxy form itself, or in a living will regarding the medical treatment she or he may want or not want. Such statements are guidance for both the health care agent and health care provider. The Health Care Proxy needs two witnesses.

What is a Do Not Resuscitate (DNR) Order?

This is a statement that the individual does not want to be revived by cardiopulmonary resuscitation (CPR) if she or he stops breathing or if his or her heart stops beating. It only applies to CPR, not nutrition, hydration or other medical procedures. There are two kinds of DNR’s: hospital DNR orders, including orders in nursing facilities and developmental centers; and community DNR orders, when the individual live in a residence in the community. It is necessary to complete a community order on a specific NYS Department of the Health form. DNR orders are commonly written for persons with life-threatening illnesses in a hospital or nursing facility, or if she or he is still able to live at his or her residence or at home. A DNR order can be requested by any capacitated person for him or herself.

The physician has to review the propriety of the order and keep assessing whether the person is capable of discussing the issue of CPR. If it is a community DNR order, the community physician must review the order at least every 90 days. If the person is in a hospital or developmental center, the physician must review the order at least every 7 days. If the person is in or transferring from a developmental center or an OMRDD licensed or operated facility, the director gets notice of the DNR order.

If the physician believes that the person is incapacitated to make a decision regarding CPR, based upon their developmental disability, a second opinion is needed regarding the developmental disability. The physician or psychologist giving the second opinion must have special training in the mental retardation / developmental disability field. This training may be found in the Public Health Law (Article 29B or OMRDD regulation, 14 NYCRR Part 633.18. If the individual is incapacitated, a surrogate can consent to a DNR order. A surrogate may consent to a DNR order if the treating physician has found that the incapacitated individual has one of four medical conditions:

  1. The person is permanently unconscious, or
  2. The person is terminally ill, or
  3. Cardiopulmonary Resuscitation (CPR) would be medically futile, or
  4. CPR would pose an extraordinary burden in light of the person’s medical condition and the expected outcome of CPR. A developmental disability by itself is not an extraordinary burden.

The surrogate can be the health care agent, a guardian, an adult son or daughter, a parent, a spouse, an adult sibling or a close friend. Having a DNR order does not mean that a person will not receive other medical and/or supportive care. The DNR order merely means that CPR will not be used.

If a health care agent is chosen to make medical decisions, the appointed agent must talk to the treating physicians and make decisions that they believe are what the individual would have wanted or that are in his or her best interest. If the person appoints an agent and also leaves instructions regarding CPR, the agent selected must use these instructions as guidance regarding CPR.

DNR orders and specific information may be written as a living will. For persons residing in OMRDD operated or licensed facilities, one witness must be a psychologist or psychiatrist familiar with developmental disabilities and the other witness must have no relationship to the residential facility.

Under state and federal law, individuals have the right to make health care decisions, including decisions regarding life-sustaining treatment. This means that people have the right to:

However, sometimes because of illness or injury people are not able to decide about treatment for themselves. At times, in fact, a surrogate will need to be appointed. In New York State the authority of a surrogate to make such decisions is supported by both statutory and case law.

What is a living will?

If there is no one to appoint as a health care agent or to make decisions for a person, specific instructions can be left in what is referred to as a Living Will. (See accompanying Resource Supplement). Instructions in a living will, even if written, may not be honored by a health care provider. The living will only indicates a person’s preferences; it does not name an agent to act on his or her behalf. A living will is a document that provides specific instructions about health care treatment. Generally, it is used to declare a person’s wishes to refuse life-sustaining treatment in certain instances. The individual should state specifically the kind of treatment they do not want, such as a respirator and the condition/s when he or she would refuse other types of treatment. The living will is intended to provide “clear and convincing proof” of the individual’s wishes. It may be challenged in court.

What is Surrogate Decision-Making

When a person has been determined not to be able to make health care decisions for himself or herself (a determination of “incapacity”), then another individual must make any necessary health care decisions for him or her. In New York State the authority of a surrogate to make such decisions is prosecuted by both statutory and case law. Usually, it is up to the treating physician to determine whether treatment requires informed consent. Informed consent means that the person being treated gets information from the treating physician about the risks and benefits of the treatment, possible alternatives to the treatment, and the medical consequences of consenting to/rejecting the treatment, in a manner that allows the person to make a decision without coercion or duress. If the person is not capable of understanding all of the information needed to make an informed decision, then a surrogate decision-maker must be found who can make such an informed decision regarding the proposed medical care. If the individual lacks capacity to make health care decisions, then the surrogate acts in the person’s best interest.

The Public Health Law states that a parent is a surrogate decision-maker for a minor child. A legally appointed guardian may also be a surrogate decision-maker for an individual in a New York State Office of Mental Retardation and Developmentally Disabilities(OMRDD) operated or licensed facility. OMRDD regulations provide a list of individuals who are looked to as decision-makers if the individual does not have capacity for decision-making. These are:

However, physicians in hospitals are not governed by OMRDD regulations and may rely on narrow authority of the Public Health Law. An incapacitated person may not have any of the above described individuals as surrogate decision-makers. In this case the health care providers may look to others to make decisions on behalf of the person; for example, other family members such as siblings, grandparents, aunts and uncles. Although they do not have legal authority at the present time to give informed consent on behalf for an incapacitated person, the surrogate decision-makers are often looked to by community health care providers to make medical decisions.

In New York State the “Best Interest” standard is the standard by which a surrogate decision-maker determines how to make decisions on behalf of an incapacitated consumer. The surrogate decision-maker considers such matters as the relief of suffering, the enhancement of the quality of life and the preservation of life. The courts have always considered the preservation of life to be in a person’s best interest. Therefore, no surrogate decision-maker (unless appointed as a health care agent pursuant to a Health Care Proxy drafted by the individual while capacitated), may make a decision to withhold or withdraw life support from the incapacitated individual.

Questions about Advance Directives

Can an Employee of an OMRDD Licensed or Operated Facility Be a Health Care Agent for a Resident of That Facility with Mental Retardation/Developmental Disability?

An employee of an OMRDD licensed or operated facility cannot be an agent for someone who resides at the facility where the employee works. The employee may be an agent if he or she works for the same agency at a different site. No one may be appointed as an agent for more than ten persons.

When Does a Health Care Agent Begin to Make Treatment Decisions for a Person?

A health care agent would begin to make treatment decisions after physicians decide that the person is not able to do so. The person will have the right to do so, as long as he or she is capable of making treatment decisions.

What Decisions Can a Health Care Agent Make?

The agent is able to make any health care decision that the person could have made if he or she was able to decide by him or herself. An agent can agree that the individual should receive health care or specific treatments and decide on specific measures that should not be provided, according to the individual’s wishes. However, if a health care agent is not aware of a person’s wishes about artificial nutrition and hydration (nourishment and water provided by feeding tubes), she or he is not able to refuse these health care measures.

How Can a Health Care Agent Make Decisions?

Instructions can be written on the health care proxy form. An agent must follow the person’s oral and written instructions, as well as religious beliefs, if known. If an agent does not know a person’s wishes or beliefs, the agent is legally required to act in his or her best interests. The agent also has the right to look at medical records and discuss the individual’s condition with any treating physician.

Who Should Be Paying Attention to the Health Care Agent?

All hospitals, physicians and other health care providers are legally required to honor the decisions of an Agent appointed pursuant to a Health Care Proxy. If a hospital or other facility would object to a decision made by an agent, such as refusing a specific treatment, they must inform the individual or agent in advance.

The individual can change the health care agent or instructions in a Health Care Proxy by just filling out a new form. A person can also have a Health Care Proxy that expires on a certain date. Otherwise, the Health Care Proxy is valid indefinitely. The Health Care Proxy stops being effective if the principal [person who completed the Proxy] refutes the Proxy. In such cases, someone else has to consent or go to court for consent, if no surrogate is available.

What Are Some Questions for a Person and His or Her Loved Ones to Consider Before an Advance Directive Is Created?

Ethics and Medical Concerns

Some agencies and DDSOs have developed a standing committee to advise their director concerning medical decisions, such as do not resuscitate orders and other advance directives as needed. This standard makes it possible for each case to be considered individually. The following is a sample of one voluntary agency’s Ethics Committee, that of the Fulton County Chapter, NYSARC, Inc. (Lexington Center).

Lexington Center Ethics Committee

Composition of the Committee
  1. Committee members are appointed by the Executive Director.
  2. Voting Members of the committee are:
    • Chairman - Assistant Executive Director or designee
    • Social Worker
    • Clergy
    • Lawyer
    • Medical representative(s)
    • Physician
    • Other committee members as assigned
  3. Committee members are asked to serve for three year terms, with a total of two consecutive terms being allowed (In the event of difficulty replacing a member, the executive director can extend a length of service if agreed upon by the member.)
Process of the Committee

The medical coordinator serves as an ad hoc advisor to the committee for the interpretation of OMRDD Regulations and can consult with the Capital District DDSO or OMRDD as needed. Following is a summary of steps taken during this process:

  1. The physician in charge of the case will generally be the party referring a matter to the Ethics Committee for discussion, however any interested party can make the referral.
  2. The referral request will be made to the medical coordinator, who in turn will schedule the meeting and notify committee members.
  3. Representatives of the individual will be asked to attend the meeting including involved family, the RN for the individual, the program coordinator or case manager, residence manager or staff; CAB if applicable and Capital District case manager.
  4. Representatives of any other institutions involved (e.g. acute care hospital) would be invited to also attend.
  5. The “case” will be presented by the physician or nursing representative, including pertinent medical history.
  6. After hearing the case and asking questions as needed, the committee will discuss the case (in private if needed). In most cases a recommendation would be made at that time for the course of action. If further information is needed before making a decision, this would be expedited so that a quick recommendation is possible. (e.g. request for input from OMRDD legal services).
  7. A formal “vote” would be taken, with a majority rules standard being used. Decisions would be placed in writing in the person’s record by the program coordinator.
  8. Minutes are kept of committee meetings and are available to members and governing bodies as indicated.
  9. Immunity: No criminal or civil prosecution will be taken for reasonable actions taken in good faith.

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Organ and Tissue Donation

Legal Considerations Concerning Consent for Organ and Tissue Donations for Persons with Disabilities

Individuals may wish to consider the option of donating organs and tissues upon their death. Discussion about this issue should be approached in a sensitive manner and in a way that is understandable to the individual.

Each state throughout the country has adopted with some modifications, the Uniform Anatomical Gift Act which encourages organ and tissue donations.

How Can Organs and Tissues be Donated?

In New York State, persons who may make an anatomical gift are separated into two categories by Section 4301 of the Public Health Law which was enacted in 1993. Either the individual may donate all or part of his or her own organs prior to death or a person on behalf of a decedent (deceased person) may authorize an anatomical gift for all or any part of the decedent’s body.

How Can a Person Make an Anatomical Gift Prior to Death?

If an individual wishes to donate his or her own organs, that person must be considered of sound mind and eighteen years of age or older. The gift may be made several ways: 1) a person can either; fill out and sign an organ donor card (including the portion on a driver’s license for organ donation) which also needs to be witnessed, or 2) a person can donate this gift in a will. The person making a gift can either identify the person or organization which the gift is intended for or the donation can be made without specifying a recipient or donee. It is important to note here that a person, and not someone on his or her behalf, can authorize donation of his or her own organs or tissues through a will. There are times family members, when making their own advanced planning, may attempt to donate the organs of their children in their will; this is not legally possible.

All adults in New York State have the right to request, consent to, or refuse medical treatment, including life sustaining treatment. All persons who are capable should be encouraged to make plans in advance about how they wish to live their lives, including end-of-life decisions, and whether they would like to donate their organs or tissues after they are deceased.

In either case, the gift takes effect immediately upon the person’s death. At the time of the individual’s death, the family, if available, should be notified about the wishes of the deceased person to donate his or her organs or tissue and to whom they may be intended.

Although New York law does not mention any restrictions applying to persons with mental retardation and/or other developmental disabilities, certain precautions may be appropriate to consider. The courts have stated that there is no correlation between institutionalization and the capacity needed to make certain personal decisions. Therefore, it seems that persons with disabilities, like anyone else are presumed to have the capacity needed to make certain personal decisions on their own behalf, unless determined otherwise. To ensure that the individual has the capacity to donate his or her organs, it may be advisable to obtain a statement from a psychologist and/or the consent of a family member of the individual with the disability in addition to the consent of the individual.

Can Someone Give Permission to Donate Another Person’s Organs and Tissues?

If an anatomical gift has not been made by the deceased individual with mental retardation and/or other developmental disabilities, it can be donated at the time of death by another person who is authorized according to Public Health law.

Certain persons are designated by law in order of priority to make a donation on behalf of the person who is now deceased. A donation may only be authorized when there is no evidence to the contrary that the deceased person would have wanted his or her organs or tissue to be donated; or and no one on the priority list of authorized persons expresses opposition to making such a gift. Such gifts may not be donated when there has been any reason to believe that the gift is made contrary to the deceased individuals religious or moral beliefs.

The following is the order of priority for persons who are authorized to make anatomical gifts on behalf of the person who is deceased:

  1. the spouse
  2. a son or daughter eighteen years of age or older
  3. either parent
  4. a brother or sister eighteen years of age or older
  5. a guardian of the person of the deceased person at the time of his or her death
  6. any other person authorized or under the obligation to dispose of the body

Who Can Receive the Organ and Tissue Donations?

Public Health law identifies the following as persons who can receive gifts or organ donations for the specified purposes:

Who is Responsible for Requesting an Anatomical Gift?

Hospitals are required by a law commonly referred to as “the required request law” to request anatomical gifts from surviving family concerning all suitable candidates.

When it has been determined that a person is a suitable candidate for organ or tissue donation, the person in charge of the hospital or a representative at the time of death requests any of the authorized persons, in order of priority stated earlier, to consent to the donation of organs or tissues.

Who Can Order an Autopsy to be Performed?

An autopsy may be ordered by the coroner or medical examiner where required by law to determine the cause of death. Public Health law requires the performance of an autopsy when it is a necessary part of an investigation, or upon written request of the district attorney, sheriff, chief of police or superintendent of state police, and when authorized by the deceased person’s spouse or next of kin.

Performance of an autopsy may also be ordered by the director of a hospital after notice of death has been given to the next of kin. An autopsy for reasons other than to determine the cause of death may be authorized by the next of kin through a written consent, specifying the purpose and extent of the dissection. This right to authorize an autopsy can only be honored if the deceased person did not carry an identification card indicating his or her objection to this procedure.

Who Can Object to an Autopsy?

The deceased person may object to an autopsy by carrying an identification card which must be signed, dated and notarized and which states opposition to the procedure.

A surviving friend or relative of the deceased person may object to the autopsy based on the religious beliefs of the deceased person, or where there is a reason to believe the procedure would be contrary to the person’s religious beliefs. However, if the medical examiner or coroner decides it is necessary to perform the autopsy over an objection, a special proceeding may be commenced in Supreme Court or County Court for an order authorizing the procedure. Furthermore, an objection will be disregarded where a “compelling public necessity” for the procedure has been documented. A “compelling public necessity” means that an autopsy is essential to a criminal investigation or homicide of which the deceased person is the victim, or that a substantial threat to public health requires the discovery of the deceased person’s cause of death.

Are There Special Procedures When a Person was a Resident of a Mental Hygiene Facility?

When the deceased person was residing in a residence operated or licensed by the Office of Mental Retardation and Developmental Disabilities (OMRDD), the Medical Hygiene Medical Review Board is responsible for determining whether the death resulted from natural causes or is unusual and warrants an investigation.

This Medical Review Board, which is administered by the New York State Commission on Quality of Care for the Mentally Disabled, has the authority to request an autopsy when the procedure is necessary to determine the cause of death. The request for an autopsy can be made irrespective of whether such an examination or autopsy was already performed. A report will then be completed after reviewing the cause of and circumstances surrounding the death of the person and the report, including the board’s findings and recommendations, will be submitted to the Commissioner of OMRDD as well as the director of the facility.

What are OMRDD Death-Regulatory Requirements?

The following are OMRDD’s regulatory requirements for reporting deaths. All loss of life is considered a reportable incident. The Commission on Quality of Care for the Mentally Disabled (CQC) requires that the QCC 100 be completed.

There are required procedures and specific forms for reporting of deaths of individuals with developmental disabilities, which are per Part 624, NYSCRR Title 14. All deaths must be reported on the QCC 100 form and sent to the Commission on Quality of Care within 72 hours of the person’s death. Mental Health Legal Services must also be notified within 72 hours in cases where death was caused by abuse. For people residing in a state operated facility, the Board of Visitors must be notified within three working days.

Form 147I is used to report a “serious reportable” incident that was the result of injuries. The 147I is to be sent to the DDSO incident review coordinator (varies within DDSOs) who receives this form within 24 hours of the death.

The 147A form is used for cases of abuse. The 147A must be sent within 24 hours of the person’s death. A death due to abuse of a person under the age of 18 must be reported to the Child Abuse Hotline. In the case of a suspicious death (other than natural), the Commission on Quality of Care is notified; and the county or city coroner or the medical examiner and the police are notified. Both of the 147 forms are tracked locally by the DDSO, and by Quality Assurance at the time of survey.

Parents, guardians, correspondents or advocates and the Willowbrook Class case manager should be notified within 24 hours of the individual’s death. For people not in the Willowbrook Class, case managers and day program staff should also be notified. Some type of “post mortem” or investigative review for any death, is usually carried out as well.

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Burial Arrangements

When a death has occurred, there are procedures and guidelines that need to be addressed during this emotional time. Typical concerns at this time are:

The Following Checklist Can be Useful as a Guide

Question Yes No
Has the funeral been pre-paid?    
Is there a burial account?    
Is there a trust account?    
Is the deceased to be buried in-ground? (Name the Cemetery)    
Is there a family burial plot available? (Name the Cemetery)    
Is there a pre-paid burial plot available? (Name the Cemetery)    
Is there a pre-paid agency burial plot available? (Name the Cemetery)    
Is there a pre-paid donated burial plot available? (Name the Cemetery)    
Was the deceased employed?    
Is there to be a viewing?    
Is there to be more than one viewing?    
Is the casket to be open?    
Is there to be a religious service?    
Is the religious service to be at the funeral home?    
Is the religious service to be at the deceased’s place of worship? (Name the place of worship)    
Is the religious service to be at the grave site?    

If there have been no prior arrangements made for a burial plot, the funeral director will advise you to contact one of the Cemetery Associations and arrange for the purchase of a plot, or he will advise you that he can do this (for a fee). When you have completed the arrangements for the burial plot, you will advise the funeral director of its location. The funeral director will discuss the cost of the various options available. If there is to be a funeral service at a place of worship, the funeral director may offer to make such arrangements; if not, you will contact the place of worship and make the arrangements. Contact all interested persons and advise them of the arrangements you have made including:

Burial Finance

Beyond the procedural aspects of arranging for a funeral, there is also a financial component. The following information can be helpful in addressing this process.

Facility Burial Account

When the DDSO director is the representative payee for a consumer, a burial account may be established as part of the Client Cash System. These funds must be separately identifiable from the person’s other accounts. Additions may be made to the original principal up to the amount of $1500.

Burial Space Items/Non-Burial Space Items

Burial space items include items such as a plot, headstone, engraving, crypt, mausoleum, vault, urn and/or other repositories. Local department of social services will consider as non-burial space items all items not determined by the Department of Health to be burial space items.

Irrevocable Pre-Need Burial Agreements/Contracts

An irrevocable pre-need agreement is a contract in which money is paid to a funeral firm, undertaker or cemetery in return for furnishing specified services/merchandise upon the death of the person to whom the agreement pertains. There is no limit on the dollar amount of the burial space and non-burial space items contained in the irrevocable burial contract. Effective January 1, 1997, all new pre-need burial agreements must be irrevocable in order to be considered exempt for Medicaid and SSI eligibility purposes.

Revocable Burial Agreements

For SSI eligible individuals, any portion of a revocable pre-need agreement that represents non-burial space items up to $1500 should be disregarded as a burial fund after first applying toward the burial fund any life insurance policies with a combined face value of $1500 or less.

County Burial

Local department of social services districts are required to pay the burial expenses for persons in receipt of Aid to Dependent Children [ADC] at the time of death or for persons who would have been eligible for ADC at the time of death. If the deceased individual was not in receipt of ADC at the time of death, an ADC application must be made on behalf of the deceased individual.

Revenue Support Responsibilities

If families/carers are not aware that the revenue field operation staff are available, they may be told of the revenue agents’ role. There are specialized responsibilities of Revenue Support Field Office Staff that can aid family, carers and staff in obtaining the necessary fiscal support during Hospice care and at the end of life for burial arrangements. Field Staff are located in each DDSO. (See accompanying Resource Supplement).

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Funerals and Memorial Services: A Planning Process for Rituals of Remembrance and Bereavement

Within our society a variety of procedures and rituals are used to pay respect to someone’s life. In death, funerals and memorial services are long-established cultural practices through which we remember and celebrate the person who has died, and through which we offer and receive comfort and consolation in our loss. These services, however much they vary by custom or circumstance, always present opportunities to support the family and friends, peers, staff, and others whose relationships were significant in the life of the individual who has died. The structured nature of these rituals can help us move through complex emotions and difficult events while honoring the memory of the person in whose name we gather.

Planning Principles

These principles apply to situations both before the death of an individual occurs and also following a death. Our first responsibility in either circumstance is to respect the personhood of that individual. Rather than trying to work from a fixed checklist, these planning principles acknowledge that we are in a dynamic process of interactions between people. Care, respect, and communication are critical to this approach. Discussing these three key factors helps us to identify who should be consulted and what the involved parties’ desires and needs are. Some of the basic questions are:

What Is/Was the Role of the Individual in the Planning Process?

Were there any advance decisions and plans about funeral or memorial service arrangements, e.g. selecting music or scripture or readings? If nothing formal was written, were there discussions or statements or other clues as to what the person would want?

What Is/Will be the Role of the Family in the Planning Process?

Under New York State law, the next of kin has the formal right and authority to decide the disposition of the body upon death. Who speaks for the family is influenced by factors of age, geographic proximity and marital status. A family’s financial resources may be relevant to the decision-making. Family customs may be relevant also, e.g. the use of a particular funeral director or burial in a family plot.

What Is/Will be the Role of Other People Significant in the Life of the Individual?

Advocates, guardians, friends, peers, volunteers, staff; the possibilities for the involvement of non-family members are as rich as the range of relationships in the life of the individual. Some will be comfortable taking an active part, and others will defer. We note that some group homes have developed their own customs to observe the death of an individual, for example, a tree or shrub planting, or a balloon-release ceremony.

What Is/Was the Person’s Religious or Spiritual Affiliation or Heritage, and Is/Will it be a Significant Factor?

Is there a religious community in which the person has been actively involved? Is the person known in that community? Or is the affiliation more a matter of birth and family record? Are there particular practices or customs that should be observed? For example, we note the prohibition against cremation of the body in Judaism; the difference between Reform and Orthodox Judaism; and the preference for certain funeral prayers in Roman Catholicism and Greek orthodoxy. Are there identified religious leaders who could assist in the planning? Is there a religious building or site that would be appropriate to accommodate people at a service? Will that religious community supply a musician?

NOTE: Observing a person’s religious affiliation or heritage is a way to honor the uniqueness of the individual, respect diversity, and fulfill one of the commitments in the Bill of Rights promised to people served by NYS OMRDD.

Flowing from who is/should be involved in the planning process, a series of basic and interrelated decisions typically are to be addressed:

Where Will the Funeral or Memorial Service be Held?

At a group home? At the site of an agency’s facilities? At the facilities of a religious group, like a church, or a synagogue? Will there be an interment at a cemetery following the service, or will it come at a later date, or will it be private? Is the site architecturally accessible, and are the staff at the site sensitive to the needs of persons who will attend? Will there be calling or viewing hours prior to the service, or will the service the first opportunity for people to gather?

When Will it be Held?

Can it be scheduled at a time convenient for the greater number of people? How does this affect work and program schedules? What transportation and staff arrangements must be made? How will variables related to weather be taken into account? Who will communicate the place/date arrangements, and to whom? Will there be a death notice in a newspaper? Will there be a designated recipient of memorial gifts, and who will decide, and how will this be communicated? Will there be refreshments, a meal, or a reception following the service, and where; and who will organize it? A series of other questions that don’t relate directly to the service are likely to be addressed as part of this process. For example, if the body is to be viewed during calling hours at a funeral home, there is an opportunity to select clothes for the individual. All these decision-making points are both opportunities for demonstrating care and respect for the person, and also are potential points of conflict between involved parties. The process now carries to planning of the service itself. The integrity and effectiveness of the planning process ensures the integrity of the service. Three simple goals help organize the components of the service:
  1. To remember and celebrate the life of the person in whose name we gather;
  2. To comfort and strengthen one another in a time of grief; and
  3. To respect the religious or spiritual heritage of the individual. The components of the service are opportunities for the inclusion of people who gather for the service and are means by which people can express their thoughts and feelings. The following list of components for a service is not exhaustive, but suggest the range of possibilities:
    • Candles v. Flowers
    • Cloths to drape or cover a table used as a focal point.
    • Pictures of the person: displayed collage, scrapbook, or portrait, and projected slides and videotapes
    • Readings: from scriptures and other sources, like poetry.
    • Music: instrumental or vocal, individual or group, live or recorded.
    • Religious symbols: e.g. a cross.
    • Objects that were special to, or symbolic of, the person.
    • Printed program: could include a biography.
    • Prayers: could be led by one person or recited by all, assisted by use of a program.
    • Opportunities for participants to speak openly.

These components can function as a means-to-the-end of inclusion and expression. For example, flowers could be brought forward at the beginning by a representative of the family and a representative of a group home to acknowledge the multiple communities of the person. The program could be illustrated with original artwork completed in memory of the person, or with the person’s own artwork. One who prefers not to speak before a group may write a poem or select a verse from scripture and ask another to read it. A person who is nonverbal may be included in a variety of ways that contribute to the service; it could be as simple as holding an object while another described why it was chosen for the service.

The greater the planners are at being comfortable with that which is genuinely uncomfortable, the greater the comfort level of everyone else. Not all will want to participate in a service, and some will choose not to, but all should be encouraged and supported. Everyone’s needs, will not be met by this or any process, and that is understandable. The planners and facilitators will learn from each experience.

Composing and Publishing an Obituary or Death Notice

In our culture, it is common practice to announce the death of a relative by publishing an obituary or death notice in the local newspaper. However, widespread the custom, many of us have never had the responsibility of writing a person’s obituary. If we have been through the experience, it was most likely for a member of our family. Few of us have written a death notice in the context of our work responsibilities.

Thinking about writing an obituary for someone we have worked with and cared for in our jobs is a task that some of us would welcome as a way to express love and show respect for that individual. Others of us will be uncomfortable even discussing this and prefer that someone else handle this. Our reactions to the task will vary based on our working relationship with that individual, the circumstances of the person’s death, the involvement of others in the person’s life, our prior involvement in similar work situations, and our personal experiences.

Recognizing both the opportunity and the challenge that writing an obituary presents, the following are offered as basic items to consider:

Whose right is it to publish an obituary?

What function does a death notice serve?

How is the content of a death notice composed?

How does an obituary get published?

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The better the preparation that has been done with the individual, the more personalized the approach is during the dying process and during the burial and funeral procedures. If completed ahead of time, the individual can determine significant factors such as whom they want as their health care agent, to whom they wish to leave their belongings, what type of funeral service they wish to have and where they wish to be buried. Preplanning also aids family and carers at a very difficult time. Whether death sudden or follows a protracted illness, advance preparation assists the survivors and eases some of their pain.