Supported Decision-Making for Individuals with Intellectual or Developmental Disabilities 

What Is Supported Decision-Making?  

Almost all adults ask friends, family members, or coworkers for ideas and advice on a regular basis. Any time you need to make a decision, and you want help to better understand your choices, you can turn to people you trust to help you consider your choices and make the best decision. When we do that, we’re using Supported Decision Making (SDM). It’s that simple. SDM helps almost everybody managing health, money, relationships, and all other important decisions of life. For adults ages 18 to 80 and beyond, here are some examples: 

  • Having a family member go to the doctor with you;
  • Asking a friend for relationship advice;
  • Having someone you trust help you set up your bank accounts and manage your finances;
  • Getting a friend or family member to help you look for an apartment or other place to live and to read the lease.

Supported decision-making is important for all of us in connection with all of the major life decisions we make.  

What Is Supported Decision Making for Persons with Intellectual and/or Developmental Disabilities?  

For those individuals over the age of 18 with an intellectual and/or developmental disability (IDD), supported decision-making is even more important because often making decisions can be difficult.  

Individuals with IDD, unless declared by a court to be lacking capacity, have the same legal rights as all adults, including the rights to: agree to medical treatment; vote; enter into contracts; get married; manage financial and legal affairs; and choose where to live. However, many if not most individuals with IDD need varying degrees of support in exercising these rights.  

Supported Decision-Making (SDM) is a formal approach to helping individuals with IDD make important decisions with the support of friends, family, and trusted allies. SDM is used by someone who has complete legal decision-making authority over their own life and is used instead of a guardianship for someone who may not need such a restrictive option. 

Restrictive Guardianships Used to Be the Preferred Option 

A guardian for an incapacitated adult is appointed by the court and held responsible for the personal affairs of an incapacitated person, including responsibility for making decisions regarding the person’s support, care, health, safety, education, therapeutic treatment, and residence. Historically, most individuals with IDD have been subject to guardianship, which restricts their civil rights in the courts.   

Nationally the number of adults under guardianship has tripled since the mid-90s with approximately 90 percent of guardianships being the most restrictive form (a total guardianship). Guardianship is an important tool when an individual is unable to: 

  • make decisions or give consent; 
  • exercise their rights; 
  • take action to protect themselves from abuse, neglect, or exploitation or; 
  • in need of an advocate to speak for their interests. 

While guardianship may be appropriate for many individuals, assumptions about the capabilities of people with IDD have resulted in guardianship being commonly used as the first and only option. This is unfortunate, but it has been the reality for decades because the understanding that individuals with IDD are capable of making their own decisions is a relatively new understanding. Laws enacted in the DC area recognizing and supporting SDM are also new. 

The Americans with Disabilities Act of 1990 was the start of the changing perceptions of people with IDD. Coupled with the self-advocacy and self-determination movements, families, providers, communities, and individuals have been rethinking assumptions about the ability of individuals with IDD to make decisions, and hopefully guardianships will be considered for these individuals less frequently than they had been. If utilized in these situations, guardianship should, to the greatest extent possible, support the self-determination of the individual with IDD. 

What Are the Advantages of Supported Decision-Making (SDM)? 

As more people with IDD live in the community instead of institutional settings, it has become important to consider new ways to support people who are competent enough to make day-to-day decisions about their lives. Here are some reasons, based on research, why SDM is often the best method for adults with IDD: 

  • Research on brain development and functioning indicates that the brain continues to mature well into a person’s 20s, potentially impacting decision-making abilities; science tells us that the brain is fully developed for most people at around age 25. This is true for neurotypical, as well as IDD, adults. In addition, for all adults, learning and life experience can improve decision-making skills. 
  • Increases in self-determination leads to better health, greater independence, better employment, and the ability to avoid and resist abuse. 
  • Studies increasingly link self-determination — the right to make choices and decisions about important parts of one’s life — to a better quality of life. For example, those who with IDD who are more self-determined do better across multiple life categories, including employment and access to health and other benefits, financial independence, and independent living. 
  • People labeled incompetent and placed under guardianships are often deprived of self-determination and the opportunity to direct their own lives. This can cause them to experience low self-esteem and feelings of inadequacy and incompetency, ultimately decreasing their ability to function. 
  • Being found incompetent can be painful, emphasizing what the person can’t do rather than focusing on their strengths. The person may feel labeled as second-class and feel a loss of dignity and respect. They may be viewed by others as not worth listening to.
  • In addition to the social impact of guardianship, individuals who are considered incompetent can be at greater risk for abuse and exploitation by others. This is because they either are not allowed to “say no” or may see themselves as incapable of making decisions. 
  • Similarly, a person who has decisions made by someone else will have fewer opportunities to learn and practice decision-making skills. 

The use of SDM does not eliminate the need for proper incapacity planning, including a general power of attorney and an advance medical directive, which our firm calls Level 1 Planning, as this type of planning is needed for adults of all ages because one never knows when one might be in an accident or experience an emergency medical condition that renders them unable to make decisions. In some cases, supported decision-making might even be used in connection with a limited guardianship for some individuals who are unable to make decisions in certain areas of their life but are able to participate in other areas. Even in situations where full guardianship is needed, it is still possible and, in most cases, essential, that the wishes and preferences of the individual are understood and respected when decisions are made on their behalf.  

Supported Decision-Making (SDM) in Virginia, Maryland, and Washington, DC 

Supported Decision-Making (SDM) in the Washington, DC, metropolitan area, covering Virginia, Maryland, and the District of Columbia, is a relatively new and innovative approach designed to empower individuals who have difficulty making decisions — often young adults with developmental or intellectual disabilities — to make decisions about their own lives, with support from a network of trusted allies.  

SDM is a person-centered alternative to guardianship and conservatorship, promoting autonomy and self-determination. It allows individuals who have difficulty making decisions — often young adults with IDDs — to actively participate in decision-making processes with the assistance of trusted supporters. SDM is typically done along with Level 1 Planning, also known as incapacity planning, which includes a Power of Attorney and an Advance Medical Directive, documents that all competent adults should have in place. 

For more details on the legal framework regarding SDM in Virginia, Maryland, and Washington, DC, please click here 

Advance Planning for Children and Adults with IDDs 

If you have a young child or adult child with special needs, such as an IDD, a special needs trust is a tool to protect their financial future. Also known as a supplemental needs trust, this type of trust preserves eligibility for federal and state benefits by keeping assets out of the name of the person with special needs, while still allowing the trust funds to be used to benefit the person with special needs.   

For those with IDDs who have turned 18 and are capable of signing incapacity planning documents such as a power of attorney and an advance medical directive, it is strongly suggested that they sign these documents as soon as possible after they turn 18. As mentioned, although those with more severe IDDs or autism may require guardianship (and sometimes conservatorship, also known as guardianship over property), this should generally be a last resort.  

Families often seek information about guardianship or Level 1 planning just before or when their child reaches age 18. Their primary fears are for their child’s safety and their ability to make health and financial decisions. Many families are unaware of the tools available for SDM, including formal Supported Decision-Making Agreements.  

SDM is intended to promote personal autonomy, choice, and independence. As Virginia, Maryland, and Washington, DC, recognize and support this approach, individuals in the region have the opportunity to take control of their lives while enjoying the necessary support to help make informed decisions.  

Please contact the Farr Law Firm anytime after your child with IDDs turns 17 to assist you and your family with preparing an appropriate Supported Decision-Making Agreement along with the vital Level 1 Planning documents, or to pursue guardianship when appropriate. We will always discuss all the options with you so you have a full understanding of the pros and cons of each approach. 

Supported Decision-Making Attorney Fairfax: 703-691-1888
Supported Decision-Making Attorney Fredericksburg: 540-479-1435
Supported Decision-Making Attorney Rockville: 301-519-8041
Supported Decision-Making Attorney DC: 202-587-2797 

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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