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In the previous chapters, we have discussed the need for you to pick the most appropriate form of substitute decision-making – powers of attorney, limited guardianship, plenary (full) guardianship – whatever gets the job done in the least restrictive way. This chapter now turns our attention to Supported Decision-Making Agreements (SDMAs).
Supported Decision Making (SDM) differs from Substitute Decision Making in one fundamental respect: SDM is supported –not substitute — decision-making. If the person with a disability signs an SDMA naming someone to help support their decision-making, the supporter cannot make decisions for the person with a disability. The person with a disability is the decision-maker, and the person helping is the supporter.
Supported Decision-Making Agreements are a relatively new concept in the disability field. A handful of states have enacted Supported Decision-Making Agreement legislation, such as Illinois, Wisconsin, Delaware, and Texas, and many other states are considering such legislation.
One way to explain SDMAs is with the five’s W’s and one H: Who, What, When, Where, Why, and How.
Who
The SDMA statute will define who can sign a Supported Decision-Making Agreement. For example, in Illinois, my home state, an adult with an intellectual or developmental disability can sign the agreement, but not a person with a mental illness.
In a supported decision-making agreement, the person with a disability (the principal or the decision-maker) names one or more supporters to help advise the decision-maker. The principal picks their supporters.
The statute will define who can and who cannot be a supporter. Supporters often include family members, relatives, and friends. However, in Illinois, our statute says a person providing paid services to an individual with a disability cannot be a supporter. Also, the individual's employer cannot be a supporter unless the employer is a family member.
The SDMA statute will also define what the supporter cannot do, such as get paid for their support or obtain unrelated confidential information about the principal. For example, if in the SDMA, the supporter was designated to help in educational matters, the same supporter would not have the right to view the principal’s medical records. And most importantly, the supporter cannot decide for the principal or unduly influence the principal.
What
The Supported Decision-Making Agreement formalizes the relationship between the decision maker (principal) and the supporter. The Supported Decision-Making Agreement is a written agreement between the person with a disability, the principal or the decision-maker, and the supporter. The principal names one or more supporters. The SDMA states in which areas of everyday living, such as decisions regarding finances, work, residence, education, social life, or medical care, the principal would like support.
The guiding purpose behind the SDMA is to give the principal the least-restrictive form of support. The principal maintains their legal autonomy. The supporter must always honor the principal’s preferences and values. The supporter can point out options, but the ultimate decision rests with the principal. For example, let’s imagine Bill, with a developmental disability, has appointed his sister, Mary, to be his supporter for “taking care of my physical and emotional health.” Bill needs some physical therapy. Mary helps find a local physical therapy practice. She helps Bill book appointments and drives Bill to the appointments. Out of all the therapists on staff, Bill likes Luke the most. Mary likes Beatrice. It’s Bill’s decision. Or, if Mary believed in aroma therapy to relax, but Bill liked playing softball – it’s Bill’s decision.
If your state has SDMA legislation, the statutory form will likely have the following elements:
Sample Form
Below is a sample SDMA statutory form from my state of Illinois:
__________________________________________________________________
I, (insert principal’s name), make this agreement of my own free will.
I agree and designate that the following individual is my supporter:
Name: …………………………………………….
Address: ………………………………………….
Phone Number: ……………………………………..
Email Address: …………………………………….
My supporter is to help me make decisions for myself and may help me with making everyday life decisions relating to the following:
(Yes/No)
obtaining food, clothing, and shelter.
(Yes/No)
taking care of my physical and emotional health.
(Yes/No)
managing my financial affairs.
(Yes/No)
applying for public benefits.
(Yes/No)
helping me find work.
(Yes/No)
assisting with residential services.
(Yes/No)
helping me with school.
(Yes/No)
helping me advocate for myself.
My supporter is not allowed to make decisions for me. To help me with my decisions, my supporter may:
(1) help me access, collect, or obtain information
that is relevant to a decision, including medical, psychological, financial, educational, housing, and treatment records;
(2) help me understand my options so that I can make
an informed decision; and
(3) help me communicate my decision to appropriate
persons.
I want my supporter to have:
(Yes/No)
A release allowing my supporter to see
protected health information under the Health Insurance Portability and Accountability Act of 1996 is attached.
(Yes/No)
A release allowing my supporter to see
confidential information under the Mental Health and Developmental Disabilities Confidentiality Act is attached.
(Yes/No)
A release allowing my supporter to see
educational records under the Family Educational Rights and Privacy Act of 1974 and the Illinois School Records Act is attached.
(Yes/No)
A release allowing my supporter to see
substance abuse records under Confidentiality of Alcohol and Drug Abuse Patient Records regulations is attached.
This supported decision-making agreement is effective immediately and will continue until (insert date) or until the agreement is terminated by my supporter or me or by operation of law.
Signed this …. day of …….., 20….
(Signature of Principal)
(Printed name of principal)
Consent of Supporter
I, (name of supporter), consent to act as a supporter under this agreement.
(Signature of supporter)
(Printed name of supporter)
(Witness 1 signature)
(Printed name of witness 1)
(Witness 2 signature)
(Printed name of witness 2)
WARNING: PROTECTION FOR THE ADULT WITH A DISABILITY
IF A PERSON WHO RECEIVES A COPY OF THIS AGREEMENT OR IS AWARE OF THE EXISTENCE OF THIS AGREEMENT HAS CAUSE TO BELIEVE THAT THE ADULT WITH A DISABILITY IS BEING ABUSED, NEGLECTED, OR EXPLOITED BY THE SUPPORTER, THE PERSON SHALL REPORT THE ALLEGED ABUSE, NEGLECT, OR EXPLOITATION TO THE ADULT PROTECTIVE SERVICES HOTLINE: 1-866-800-1409, 1-888-206-1327 (TTY).”
This form is not intended to exclude other forms or agreements that identify the principal, supporter, and types of supports.
(Source: P.A. 102-614, eff. 2-27-22.)
(755 ILCS 9/55)
Sec. 55. Reliance on agreement; limitation of liability.
(a) A person who receives the original or a copy of a supported decision-making agreement shall rely on the agreement.
(b) A person is not subject to criminal or civil liability and has not engaged in professional misconduct for an act or omission if the act or omission is done in good faith and in reliance on a supported decision-making agreement.
(Source: P.A. 102-614, eff. 2-27-22.)
When
A Principal can sign an SDMA once they are an adult, age 18 in most states.
Where
As you can see from the Illinois SDMA form, the principal initials the areas where they want support and where they do not want support:
For example, the SDMA can be used for support in residential settings. Imagine you have four children, one of them, Bill, has a developmental disability. You die. Bill is living in a residential facility. Bill doesn’t have a guardian. However, Bill needs help advocating with the residential staff for his needs. Bill could have an SDMA naming his sister, Mary, his residential supporter. Now, the residential team knows to keep Mary “in the loop” on anything affecting Bill’s quality of care.
Or for example, the SDMA can be used for education support. Your child could name a supporter to attend IEP meetings. Or, maybe your child will be attending a community college. Your child wants to name a supporter to help with registration, scheduling tutors, and helping set up support during testing.
The SDMA can be used for support in medical care. The supporter can help select doctors, schedule appointments, help the principal understand options, and discuss the benefits and risks of any procedure. If the principal so desires, the supporter can attend the appointments.
The SDMA can be used concerning work: finding work, writing a resume, getting to work, and talking with human services.
The SDMA can be used to help with finances or obtain government benefits. The principal may need help paying bills, budgeting, planning a vacation, applying for benefits, or notifying Social Security of their wages. (Remember, earning income reduces the adjusted SSI benefit if the adult child receives SSI.)
The SDMA can be used to help with independent living. The supporter can help find an apartment or a condominium, understand the contract terms, hire people to clean the apartment, and set up a cooking routine.
As you can imagine, SDMAs can be used almost anywhere your child needs support.
Why
The purpose of SDMAs is to provide a less restrictive alternative to guardianship. An alternative that permits the person with a disability to keep their full legal autonomy and formalize in writing how other trusted people can help support the person with a disability make decisions.
The SDMA also helps break through a common challenge: the confidentiality barrier. Nothing is more frustrating to a parent than when they are trying to help their adult child, but because their child is now an “adult,” the parents do not have access to their child’s confidential information.
In the SDMA, as the principal, your child can authorize a supporter to access, collect, or obtain information in a specific area, such as education, medical records, or finance. It should be noted, though, in addition to the SDMA, the principal will likely be asked to sign a release allowing the supporter to access information authorized under the SDMA. For example, the principal will likely be asked to sign a HIPAA Release for the supporter to access the principal’s medical records.
I congratulate those people who conceived of the SDMA and drafted the legislation. It’s a cool idea.
How
Frankly, I do not know how the SDMA will play out. Whether or not the SDMA becomes broadly accepted will depend on its usefulness.
From my experience, SDMAs have been used relatively infrequently. First: They are new and relatively untested. Second: While parents want to support their child with a disability, they also want some form of decision-making authority. And, of course, whether you are a guardian for your child or an agent under a power of attorney, you should always try to promote your child’s decision-making capability.
An SDMA will never replace a power of attorney. And I don’t think that was ever the intent of the legislation. For example, every person with the requisite mental capacity should have a power of attorney for healthcare: you, me, and all your adult children with the mental capacity to sign one.
As you have already learned, the knee-jerk reaction for many parents once their child with a disability turns 18 is to “get guardianship.” Perhaps, as SDMAs gain popularity, these same parents may choose some combination of limited guardianship, powers of attorneys, and SDMAs instead of plenary guardianship.
Even if your child never uses an SDMA, I think filling out an SDMA would be a helpful exercise. Filling out an SDMA allows you and your child to think through what areas your child needs support and who would be the best person to provide that support. Doing so may not be so important now while you provide most of the advocacy for your child, but it could be vitally important after your death.
In the previous chapters, we have discussed the need for you to pick the most appropriate form of substitute decision-making – powers of attorney, limited guardianship, plenary (full) guardianship – whatever gets the job done in the least restrictive way. This chapter now turns our attention to Supported Decision-Making Agreements (SDMAs).
Supported Decision Making (SDM) differs from Substitute Decision Making in one fundamental respect: SDM is supported –not substitute — decision-making. If the person with a disability signs an SDMA naming someone to help support their decision-making, the supporter cannot make decisions for the person with a disability. The person with a disability is the decision-maker, and the person helping is the supporter.
Supported Decision-Making Agreements are a relatively new concept in the disability field. A handful of states have enacted Supported Decision-Making Agreement legislation, such as Illinois, Wisconsin, Delaware, and Texas, and many other states are considering such legislation.
One way to explain SDMAs is with the five’s W’s and one H: Who, What, When, Where, Why, and How.
Who
The SDMA statute will define who can sign a Supported Decision-Making Agreement. For example, in Illinois, my home state, an adult with an intellectual or developmental disability can sign the agreement, but not a person with a mental illness.
In a supported decision-making agreement, the person with a disability (the principal or the decision-maker) names one or more supporters to help advise the decision-maker. The principal picks their supporters.
The statute will define who can and who cannot be a supporter. Supporters often include family members, relatives, and friends. However, in Illinois, our statute says a person providing paid services to an individual with a disability cannot be a supporter. Also, the individual's employer cannot be a supporter unless the employer is a family member.
The SDMA statute will also define what the supporter cannot do, such as get paid for their support or obtain unrelated confidential information about the principal. For example, if in the SDMA, the supporter was designated to help in educational matters, the same supporter would not have the right to view the principal’s medical records. And most importantly, the supporter cannot decide for the principal or unduly influence the principal.
What
The Supported Decision-Making Agreement formalizes the relationship between the decision maker (principal) and the supporter. The Supported Decision-Making Agreement is a written agreement between the person with a disability, the principal or the decision-maker, and the supporter. The principal names one or more supporters. The SDMA states in which areas of everyday living, such as decisions regarding finances, work, residence, education, social life, or medical care, the principal would like support.
The guiding purpose behind the SDMA is to give the principal the least-restrictive form of support. The principal maintains their legal autonomy. The supporter must always honor the principal’s preferences and values. The supporter can point out options, but the ultimate decision rests with the principal. For example, let’s imagine Bill, with a developmental disability, has appointed his sister, Mary, to be his supporter for “taking care of my physical and emotional health.” Bill needs some physical therapy. Mary helps find a local physical therapy practice. She helps Bill book appointments and drives Bill to the appointments. Out of all the therapists on staff, Bill likes Luke the most. Mary likes Beatrice. It’s Bill’s decision. Or, if Mary believed in aroma therapy to relax, but Bill liked playing softball – it’s Bill’s decision.
If your state has SDMA legislation, the statutory form will likely have the following elements:
- The names of the principal and the supporter(s);
- Designating which areas the principal wants support and which areas the principal does not want support;
- A section about the records the principal wants to share with the supporter;
- A release allowing the supporter to see various records;
- The principal’s and supporter’s signatures;
- Witness or notary signatures.
Sample Form
Below is a sample SDMA statutory form from my state of Illinois:
__________________________________________________________________
I, (insert principal’s name), make this agreement of my own free will.
I agree and designate that the following individual is my supporter:
Name: …………………………………………….
Address: ………………………………………….
Phone Number: ……………………………………..
Email Address: …………………………………….
My supporter is to help me make decisions for myself and may help me with making everyday life decisions relating to the following:
(Yes/No)
obtaining food, clothing, and shelter.
(Yes/No)
taking care of my physical and emotional health.
(Yes/No)
managing my financial affairs.
(Yes/No)
applying for public benefits.
(Yes/No)
helping me find work.
(Yes/No)
assisting with residential services.
(Yes/No)
helping me with school.
(Yes/No)
helping me advocate for myself.
My supporter is not allowed to make decisions for me. To help me with my decisions, my supporter may:
(1) help me access, collect, or obtain information
that is relevant to a decision, including medical, psychological, financial, educational, housing, and treatment records;
(2) help me understand my options so that I can make
an informed decision; and
(3) help me communicate my decision to appropriate
persons.
I want my supporter to have:
(Yes/No)
A release allowing my supporter to see
protected health information under the Health Insurance Portability and Accountability Act of 1996 is attached.
(Yes/No)
A release allowing my supporter to see
confidential information under the Mental Health and Developmental Disabilities Confidentiality Act is attached.
(Yes/No)
A release allowing my supporter to see
educational records under the Family Educational Rights and Privacy Act of 1974 and the Illinois School Records Act is attached.
(Yes/No)
A release allowing my supporter to see
substance abuse records under Confidentiality of Alcohol and Drug Abuse Patient Records regulations is attached.
This supported decision-making agreement is effective immediately and will continue until (insert date) or until the agreement is terminated by my supporter or me or by operation of law.
Signed this …. day of …….., 20….
(Signature of Principal)
(Printed name of principal)
Consent of Supporter
I, (name of supporter), consent to act as a supporter under this agreement.
(Signature of supporter)
(Printed name of supporter)
(Witness 1 signature)
(Printed name of witness 1)
(Witness 2 signature)
(Printed name of witness 2)
WARNING: PROTECTION FOR THE ADULT WITH A DISABILITY
IF A PERSON WHO RECEIVES A COPY OF THIS AGREEMENT OR IS AWARE OF THE EXISTENCE OF THIS AGREEMENT HAS CAUSE TO BELIEVE THAT THE ADULT WITH A DISABILITY IS BEING ABUSED, NEGLECTED, OR EXPLOITED BY THE SUPPORTER, THE PERSON SHALL REPORT THE ALLEGED ABUSE, NEGLECT, OR EXPLOITATION TO THE ADULT PROTECTIVE SERVICES HOTLINE: 1-866-800-1409, 1-888-206-1327 (TTY).”
This form is not intended to exclude other forms or agreements that identify the principal, supporter, and types of supports.
(Source: P.A. 102-614, eff. 2-27-22.)
(755 ILCS 9/55)
Sec. 55. Reliance on agreement; limitation of liability.
(a) A person who receives the original or a copy of a supported decision-making agreement shall rely on the agreement.
(b) A person is not subject to criminal or civil liability and has not engaged in professional misconduct for an act or omission if the act or omission is done in good faith and in reliance on a supported decision-making agreement.
(Source: P.A. 102-614, eff. 2-27-22.)
When
A Principal can sign an SDMA once they are an adult, age 18 in most states.
Where
As you can see from the Illinois SDMA form, the principal initials the areas where they want support and where they do not want support:
- Obtaining food, clothing, and shelter;
- Taking care of my physical and emotional health;
- Managing my financial affairs;
- Applying for public benefits;
- Helping me find work;
- Assisting with residential services;
- Helping me with school;
- Helping me advocate for myself;
For example, the SDMA can be used for support in residential settings. Imagine you have four children, one of them, Bill, has a developmental disability. You die. Bill is living in a residential facility. Bill doesn’t have a guardian. However, Bill needs help advocating with the residential staff for his needs. Bill could have an SDMA naming his sister, Mary, his residential supporter. Now, the residential team knows to keep Mary “in the loop” on anything affecting Bill’s quality of care.
Or for example, the SDMA can be used for education support. Your child could name a supporter to attend IEP meetings. Or, maybe your child will be attending a community college. Your child wants to name a supporter to help with registration, scheduling tutors, and helping set up support during testing.
The SDMA can be used for support in medical care. The supporter can help select doctors, schedule appointments, help the principal understand options, and discuss the benefits and risks of any procedure. If the principal so desires, the supporter can attend the appointments.
The SDMA can be used concerning work: finding work, writing a resume, getting to work, and talking with human services.
The SDMA can be used to help with finances or obtain government benefits. The principal may need help paying bills, budgeting, planning a vacation, applying for benefits, or notifying Social Security of their wages. (Remember, earning income reduces the adjusted SSI benefit if the adult child receives SSI.)
The SDMA can be used to help with independent living. The supporter can help find an apartment or a condominium, understand the contract terms, hire people to clean the apartment, and set up a cooking routine.
As you can imagine, SDMAs can be used almost anywhere your child needs support.
Why
The purpose of SDMAs is to provide a less restrictive alternative to guardianship. An alternative that permits the person with a disability to keep their full legal autonomy and formalize in writing how other trusted people can help support the person with a disability make decisions.
The SDMA also helps break through a common challenge: the confidentiality barrier. Nothing is more frustrating to a parent than when they are trying to help their adult child, but because their child is now an “adult,” the parents do not have access to their child’s confidential information.
In the SDMA, as the principal, your child can authorize a supporter to access, collect, or obtain information in a specific area, such as education, medical records, or finance. It should be noted, though, in addition to the SDMA, the principal will likely be asked to sign a release allowing the supporter to access information authorized under the SDMA. For example, the principal will likely be asked to sign a HIPAA Release for the supporter to access the principal’s medical records.
I congratulate those people who conceived of the SDMA and drafted the legislation. It’s a cool idea.
How
Frankly, I do not know how the SDMA will play out. Whether or not the SDMA becomes broadly accepted will depend on its usefulness.
From my experience, SDMAs have been used relatively infrequently. First: They are new and relatively untested. Second: While parents want to support their child with a disability, they also want some form of decision-making authority. And, of course, whether you are a guardian for your child or an agent under a power of attorney, you should always try to promote your child’s decision-making capability.
An SDMA will never replace a power of attorney. And I don’t think that was ever the intent of the legislation. For example, every person with the requisite mental capacity should have a power of attorney for healthcare: you, me, and all your adult children with the mental capacity to sign one.
As you have already learned, the knee-jerk reaction for many parents once their child with a disability turns 18 is to “get guardianship.” Perhaps, as SDMAs gain popularity, these same parents may choose some combination of limited guardianship, powers of attorneys, and SDMAs instead of plenary guardianship.
Even if your child never uses an SDMA, I think filling out an SDMA would be a helpful exercise. Filling out an SDMA allows you and your child to think through what areas your child needs support and who would be the best person to provide that support. Doing so may not be so important now while you provide most of the advocacy for your child, but it could be vitally important after your death.