The Voice® Newsletter

April 2011 - Vol. 5, Issue 7

The Voice® is the e-mail newsletter of The Special Needs Alliance. This installment was written by Special Needs Alliance member Leonard Berg. A graduate of the Washington University School of Law in St. Louis, Missouri, Leonard is a solo practitioner in East Alton, Madison County, Illinois. Leonard’s prior experience includes service as a public defender, prosecutor, and municipal attorney and he has participated in mental health commitment hearings representing both patients and the state. His practice currently focuses on estate planning, special needs planning and elder law. Leonard has been designated as an Illinois Leading Lawyer. He is involved in a variety of civic organizations and has been a speaker for numerous civic groups.

Decisions Arising with the Death of a Child

Making funeral and memorial arrangements for a person with disabilities is an important part of a comprehensive special needs plan. Most special needs plans focus on the economic benefit of purchasing funeral plans and/or burial plots for an individual who is receiving public benefits such as Medicaid or Supplemental Security Income. It is equally if not more important to consider the details of implementing a funeral plan or other celebrations of life. Many families have a difficult time approaching such inevitable topics. The death of a loved one brings many emotions to the surface, and the necessary decision-making can be overwhelming. This can be particularly painful when it is the parent who needs to make funeral arrangements for a child.

In many cases, clients receive the instructions from the special needs planning attorney to purchase appropriate irrevocable burial plans and to provide the documentation to the attorney without anticipating any future difficulty or thought about how to implement the plan. In rare cases, however, substantial family conflict can occur. Before the individual with special needs passes away, the family and the attorney should analyze who has the decision-making authority and the scope of that authority.

Recently, an appellate court held that a funeral home’s actions in delivering a decedent’s body to the county morgue (where it decomposed) were not improper, since the feuding family members could not agree on funeral and memorial arrangements. While a rather extreme example, this case highlights difficulties that can arise and illustrates the importance of both having a funeral and memorial plan in place, and designating someone to carry out those plans. As with so many legal challenges, the issues described in this case can be circumvented by planning ahead.

Since every case is different and every individual is unique, there is no “one-size-fits-all” plan for funeral and memorial services. In times of sorrow and remembrance, families and loved ones have important decisions to make and issues to address, including many of the following:

  • Should an autopsy be conducted? Many times, people object to an autopsy. However, an autopsy can often produce important information if there are questions regarding cause of death or the nature of an illness. If an autopsy is considered, the cost is usually privately paid as an additional cost to the burial and funeral plan.
  • Should the body be donated to science or a medical school?
  • Is cremation rather than burial appropriate? If the remains are cremated, who selects the urn and who keeps it? If burial is appropriate, who selects the casket?
  • Which cemetery lot or mausoleum space will be used? What happens if the cemetery lot is owned by a different family member? What permission is necessary from the owners of the lot? What if the available cemetery lot is far from the surviving family members?
  • Who writes the obituary? What names will be included or omitted in the obituary? Should the obituary include any description of any family relationships or hobbies?
  • Who will be authorized to edit or make postings to the Facebook page of the decedent?
  • What information should be on the headstone?
  • Should there be an open casket? Will the funeral service include public visitation or will it be entirely private? If special items or mementos are included in the casket for burial, who decides what to include?
  • Who can be omitted or excluded from the funeral service?
  • If a photographic display or video is prepared, who composes the photo array? Who decides what photos or images are included within the video display? Can the family agree to pay for copies of photos, video or other images so that appropriate parties can retrieve their memories?
  • What religious services are appropriate? Are any other services, such as Masonic right services or Veteran’s services, appropriate?
  • Who selects the casket?
  • Who selects the clothes?
  • If there is no prepaid funeral plan but there is life insurance, will the payee of the life insurance policy agree to use those funds for the funeral?

In each of the above issues, it is also important to know who has the authority to make these sensitive and often painful decisions. The ultimate decision may depend upon the laws of a particular state. Generally, if the decedent was an adult with disabilities who was capable of preparing written directions in some form addressing the disposition of his or her own remains and intentions regarding a memorial service or gathering—and actually carried out that task—those directions should be honored. People often specify these wishes in a will, but a will is not necessarily the best place to provide such directions, since a will often is not read or even located immediately following the person’s death.

In some states, an agent acting under the authority of a health care directive or power of attorney is permitted to continue to act in that capacity with respect to burial decisions even after the death of the person with disabilities. Some states have a specific form document through which a competent adult may provide his or her directions.

When a person was unable to prepare and execute the appropriate documents for himself or herself, someone else will need to take charge. To address the many decisions that must be made, one of the primary planning considerations should be appointing an individual or individuals who will have authority to make these decisions.

As a general rule, if the deceased was a minor child, then the parents will have authority to make these decisions. Parents with joint custody, whether divorced or never married, will usually retain equal authority to make decisions. If one parent has sole custody of the minor child, presumably the custodial parent would have the right to make the decisions on behalf of the child, although individual state rules might still give the other parent a say in the matter. In some states, a parent of a minor child may designate an agent under the health care power of attorney to make these decisions for minor children. Even with this type of planning, however, it is uncertain how, or even if, this authority would alter the authority of a surviving parent or guardian.

As with children, state laws differ about the authority of a guardian following the death of an adult ward. The guardian of the person (some states use different terminology, such as conservator) appointed by a court may be the individual with the primary right to make decisions regarding funeral and burial. There is a potential for conflict whenever co-guardians may be appointed, similar to that of divorced parents of a minor child. A conflict may also arise when a non-family member is the guardian – for example, the public guardian. A guardian should, to the extent possible, make decisions that are consistent with the wishes and belief system of the ward or principal, when such wishes are known. It is not appropriate for the guardian or agent to use his or her own judgment and disregard the wishes of the ward or principal.

If a disagreement about funeral arrangements arises, mediation may be helpful. Mediation is a process that allows a skilled person to guide the parties in a discussion so that they can reach an agreement among themselves. The parties, not the mediator, reach a decision. Skilled negotiators or mediators can allow competing family members or interested parties to participate in some ways, but not in others.

“Rest in Peace” is the common refrain and hope expressed at the death of our loved ones. Addressing and resolving these issues through planning, and mediation when necessary, makes it more likely that peace will come to the family members and close friends at their time of loss.

About this Newsletter: We hope you find this newsletter useful and informative, but it is not the same as legal counsel. A free newsletter is ultimately worth everything it costs you; you rely on it at your own risk. Good legal advice includes a review of all of the facts of your situation, including many that may at first blush seem to you not to matter. The plan it generates is sensitive to your goals and wishes while taking into account a whole panoply of laws, rules and practices, many not published. That is what The Special Needs Alliance is all about. Contact information for a member in your state may be obtained by calling toll-free (877) 572-8472, or by visiting the Special Needs Alliance online.


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