Transition Map

Estate planning for families who have a child with a developmental disability must be done carefully. It is best to seek advice from a professional financial planner who is knowledgeable about the legal issues surrounding the accumulation of financial assets by an adult with a disability.

An adult with a developmental disability may be disqualified from needs-based government funding programs if he/she has financial assets of more than $2000.00 in his/her name, including life insurance policies.

You should seek legal counsel for estate planning for an adult child with a developmental disability. You may want to ask about:

• Informal Estate Planning
  
• Formal Estate Planning
  
• Planning for Assets of the Disabled Person
  
• The Letter of Intent
  
• Getting It Together: Assemble a Life Planning Notebook
  
• Legal Considerations in Planning for Individuals with Autism Spectrum Disorders: A Guide for Siblings and Other Caregivers
  

Guardianship, Substitute Decision Making, End of Life Decisions

Substitute Decision Making for a Person with Disabilities

One question I have been called on frequently to answer over the years is whether parents or other close family members have the ability to serve as substitute decision-makers for their adult child or other loved one with a disability. The law has undergone a change that became effective in early 2008 which provides some new options.

At the outset, it is important to understand that when we talk about substitute decision making there are two distinct categories of possible substitute decision making. The first involves property rights and financial matters and the other is involved with personal care and health care issues.

Property rights and financial matters.

This aspect of substitute decision making is encountered far less frequently than issues involving personal care decisions, etc. The reason for this is that in many cases persons with disabilities do not have significant assets requiring administration and frequently only receive income from government programs which allow for the establishment of Representative Payees to handle this program income. Representative Payees are governmentally recognized agents for persons receiving government assistance and for many individuals nothing further is required.

In any case where a Representative Payee is not completely adequate, such as where the substitute decision making involves other sources of income or administration of assets that are not permitted to be handled by a Representative Payee (such as private income sources or privately held assets owned by the person with a disability), it is necessary that the substitute decision-maker receive a formal appointment. This can happen in one of two ways:
a) the person with a disability can officially appoint the substitute decision-maker by designating them as an agent under a written power of attorney; or
b) the person desiring to be substitute decision-maker would have to be appointed guardian of the estate for the person with a disability in a court-ordered guardianship.

The first of these two options can only happen if the person with a disability has the legal capacity to knowingly and intelligently designate the substitute decision-maker as agent under the power of attorney. If this is possible, the power of attorney is the best route to take because it does not result in a person with a disability having to be declared legally incapacitated.

The guardianship route by contrast, has the disadvantage of requiring a declaration of incapacity of the person with a disability and a further disadvantage of the requirement for ongoing court supervision and annual filings with the appointing court. Guardianship is also less flexible in that a guardian does not have the ability to use any of the principal funds received by the Guardian without specific court authorization. An agent under power of attorney is free to spend either principal or income without court approval. However it must be stated that an agent under power of attorney is still a fiduciary under the law and is fully accountable to the person who appointed him and can be held responsible for any improprieties by court proceedings.

Personal care and health care issues.

It is in this area that recent changes in Pennsylvania law have offered new alternatives to substitute decision-makers. Prior to these changes the two alternatives discussed above of a power of attorney, or court-appointed guardianship were the only ways to handle substitute healthcare decision-making. In the guardianship alternative the person appointed is known as "guardian of the person" of the individual in question. The appointment of guardian of the person also requires a declaration of incapacity.

Effective early in the year 2008 Act 169 restated the law of healthcare decision-making, including both proactive healthcare decision-making and end-of-life decision-making. This Act has combined the concepts of a health care power of attorney and an advance directive for end-of-life decision-making into a single piece of legislation. This new law establishes a hierarchy of persons who are entitled to make decisions for another person. The Act gives due regard to substitute decision-makers appointed under a valid power of attorney, or by court-appointed guardianship, but goes further and provides for an entire system of substitute decision making when neither of those appointments is possible, or has occurred.

Accordingly, if substitute decision making is required for person with a disability and there is no one in place who has an official appointment to play that role, there is a specified hierarchy of persons who are authorized under the law to be the "healthcare representative" for the individual in question. Specifically, the persons authorized to serve as healthcare representative in mutually exclusive categories are as follows:

(i) The spouse, unless an action for divorce is
pending, and the adult children of the principal who are not the children of the spouse.
(ii) An adult child.
(iii) A parent.
(iv) An adult brother or sister.
(v) An adult grandchild.
(vi) An adult who has knowledge of the principal's
preferences and values, including, but not limited to,
religious and moral beliefs, to assess how the principal
would make health care decisions.

In order for a healthcare representative to have the authority to act it is necessary that an attending physician of the person with a disability make a written declaration that the person has been found to be incompetent under the standard provided in the Act. Once this written declaration is in place the healthcare representative may engage in substitute decision making for the person even if the person objects, with the only exception being in the withholding of life-sustaining treatment in an end-of-life situation. In that latter case, the wishes of the person with a disability will be followed rather than those of the healthcare representative, notwithstanding a finding of incompetence.

As a result of Act 169 parents and other family members of persons with disabilities can effectively provide substitute decision making for person lacking the ability to grant a power of attorney without having to have the person declared incapacitated and become involved in cumbersome guardianship proceedings.

For futher information on this topic go to:http://www.millerturetsky.com

Securing future for a disabled child

By Sandra Block, USA TODAY

Most parents of special needs children realize their children probably will outlive them, yet nearly a third have made no plans for their child's financial future, according to a MetLife survey released earlier this year.
And while 60% of parents said their special needs child will require lifetime care, the majority hadn't even prepared a will, says Nadine Vogel, founder of MetLife's special-needs division.

Letter of Intent

A letter of intent provides guidelines for your child's caregivers and guardians after you're gone. The letter should include the child's medical history, daily care requirements, and the child's likes and dislikes. Here are some questions the letter of intent should address:

Read the entire article, click here...