Assisted Decision Making: Does the National Trust Act Deliver?

By Madhumita Puri

Through the tenets of the National Trust Act of 1999, the "protectors" of persons with autism, cerebral palsy, mental retardation and multiple disabilities seek to develop a situation that:

• Enables and empowers persons with disability to live as independently and as fully as possible within and as close to the community to which they belong;
  
  
• Strengthens facilities to provide support to persons with disability to live within their own families;
  
  
• Extends support to registered organization to provide need based services during the period of crises in the family of persons with disability;
  
  
• Deals with the problems of persons with disability who do not have family support;
  
  
• Promotes measures for the care and protraction of persons with disability in the event of death of their parent or guardian;
  
  
• Seeks to evolve a procedure for the appointment of guardians and trustees for persons with disability requiring such protection;
  
  
• Facilitates the realization of equal opportunities, protection of right and full participation of persons with disability;
  
  

In addition, help set up self-help groups of persons with disabilities to realize their rights! Interestingly the issue of appointing a guardian under the tenets of this law is governed by the constitution of a local level committee, consisting of an officer of the State, a representative of an NGO and a (any) person with a disability. Throughout the Act, as one weaves through the clauses and sub clauses, there appears to be no involvement of the person with the disability (even notionally).

As one reads through the Act, there is a strong sense of a need to evolve from this very 'protected' standpoint to one that is person-centered, that is to evolve a system that emerges from a "person-centered plan " into a 'planning process' for people with disabilities.

The person centered planning process is defined generally as a process of planning for and supporting an individual that honors the individual's preferences, choices and abilities. The person-centered planning process assumes that all people have preferences, regardless of their level of disability. Through this process, the person's preferences are determined by any method possible.

In some cases, observations of the individual's behavior by those closest to them are used to determine preferences. Such preferences are then honored as long as they are not harmful to the individual. This process of determining preferences and choices enhances the dignity and self-determination of individuals and is far more reliable than having a court-appointed, single person to make all decisions with or without the input of the individual with a disability.

It is our contention that the National Trust Act should address the development of this process.Decision-making by the individual is the key to this effort. Obviously, appointing a guardian to make decisions for the individual can defeat this process. However, asserting that each individual should make their own decisions does not mean that each individual does not need help, assistance and support in doing so.

But before we jump to the conclusion that an amendment is the only answer, we need to sensitize parents about the process of self-determination and assisted decision making. All laws, all rules, all very well intentioned treatises will fall flat on their face unless the parent believes that their child can be a 'participant' in making choices, believes strongly enough to follow it in their day-to-day lives. Reproduced below is the first person account of a parent doing just this.

"My daughter Amanda and I traveled to Brisbane recently to see (hear and experience) Mama Mia. We had a wonderful time thank you. We also further developed what we started some years ago: We do things as a team. Everything we do or plan we discuss first and we come to decisions we both like and - importantly - we both have ownership in. As Amanda is intellectually disabled there are many times she needs some help, guidance, steering toward a good decision. Done tactfully/sensitively this does not need to be intrusive and will not affect the ownership issue. This is important because being part owner she also shares responsibility.

This combination of ownership and responsibility is most empowering, and as a result Amanda's confidence is increasing, and she is becoming more assertive and sure of herself. She feels she is an equal now, which allowing for her disability, she of course is. Upon reflection I think Amanda and I discovered what assisted decision making is really about:

"Assisted decision making is giving a person ownership in a decision he is not competent to make on his own".

John, Amanda's father also writes:

When you look at families with children growing up, you tend to find two major groupings:

1. families that are rule bound, and enforce control, for the parents benefit, rather than the children's;
2. families who are focused on the children and who seek a balance transfer of responsibility and authority from the parents to the children, as their capacity develops.

This runs directly parallel with the process I experienced with my daughter. The obvious question we have to keep asking ourselves, and encourage others to ask, is: "For whose benefit is this?" If the ready answer is NOT: the child or the disabled person, than we have it wrong, and need to take a serious look at why.

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