Preliminary Results from our Supported Decision-Making Survey

Date: 
Tuesday, September 1, 2015

People are telling us how they are supported and how it makes them feel,
Supporters are telling us how less restrictive options to guardianship were identified, considered, and decided,
We are hearing about the impact of supported decision-making relative to a more restricted role in decision-making through guardianship, and
Respondents are telling us what lessons can be learned.

People are telling us how they are supported and how it makes them feel:

i look at things and seek advice from other people before doing them

I like being presented options and recommendations.

A lot of times I have many things that I want to do, but I can't figure out what to do first or what is most important. My husband is very helpful and helps me pick what order to do them in. He also helps me make decisions about buying things, and that really helps me to avoid making irresponsible decisions. I feel a lot more organized with his help.

I make my own decisions but I get so anxious that I don't know what to do so I ask for help.

Mostly, if I am unsure of myself on a decision, I ask for help making the decision from my fiance. He gives me his opinion on what I should do or how to do it, and I take it into consideration. I don't follow his advice 100% of the time, but I do in probably 80% of decisions I make. We agree on many things, so hearing him say what I was thinking out loud gives me confidence and validation. I'm a very shy and nervous person, so sometimes I need that validation in order to go forward with something, even if it is something I've decided to do by myself. It makes me feel good to have help.

I have good brain days and bad brain days and a lot of the time people don't understand. I might need help on a bad brain day that I don't need on a good one! And they get mad because they think I should be able to do it every day.

I often ask my partner for help with decisions because I am not confident I can work out whether or not something is a safe or reasonable idea, I feel more secure and confident that I have picked something that is rational and what I want because he helps me consider other options or points of view that are good that I would not think of and might miss out on otherwise

I like having someone tell me what to do. It is scary to have to make my own choices. What if I choose wrong? But it is important that that be someone who wants what's best for me and wants me to be happy, not someone who wants to make whatever choices are most convenient for them. They want me to make my own choices eventually.

Feels empowering

Most people don't understand why it's hard to make decisions about simple things like what I want to eat. I want them to help me but they don't know how and get advice like "just choose the one you like." Usually other people with autistic traits or high anxiety understand better that I need a logical reason and explanation, not a feeling.

Supporters are telling us how less restrictive options to guardianship were identified, considered, and decided:

I as parent determined that guardianship and deprivation of legal rights were not appropriate child's school

Doctor and family consulted.

team discussion

maintaining individual rights with supports was always the goal; guardianship (full or partial) was never considered

She's always broken barriers so why keep her from that?

Thru case worker, family.

Though research and reading other people's stories

read, participated in conferences, started support group, consulted with legal prof

I did not want my son to be in guadianship after I'm no longe here. I feel my son knows when to ask for help, he also knows his limitations.

research by parent

we have not sought guardianship so as to not limit our son's ability to make his own decesions

By giving her choices so she is included in the decision makeing

We are hearing about the impact of supported decision-making relative to a more restricted role in decision-making through guardianship:

SDM help a person feel empowered and feel more self-confident

I think that this is the best way to go just so long as the individuals have the capacity to engage in conversation re: what they need. I know that, in my own life, I'll seek advice when I need it but that doesn't mean that I want my entire life micromanaged by somebody else. Most people don't. People need friends who see them as peers instead of as brain-dead.

Supported decision making enables the person to be the agent and center of their own decisions. That agency is legally eliminated when the person is declared legally incimpetent and placed under guardianship.

As long as people involved are nonjudgmental and compassionate, people are allowed to grow to their full potential.

The individual is allowed to maintain their civil rights, determine what they want to do with their life, where they live, what community activities they participate in, where they attend church, who they choose to be friends with, and allow them integration into their community as able.

Helps our son control his own life

it allows the individual to make an informed decision with guidance and support

It allows more options

allows for dignity, allows for family members outside the "legal" role to still have influence on adult children

Leaves more choice to the individual. Doesn't take away rights.

Guardianship is an outdated practice that strips people of their rights and autonomy! It is not needed! Making support offered to friends and family more formalized with written agreements is also unnecesary! Please don't do it!

She does not lose her civil rights.

The client has more control of their life. They know what direction they want to go in.

It is best between parents and case managers. After case managers provide some information or suggestions, parents will be willing to do it.

increased sense of efficacy[for the client] leading to greater self-determination

Confidence , self esteem , decisiveness and education for the person with a disability and their family/supporters or workers

fewer restrictions, no involvement from court, less expensive, less time consuming

Achieving better control over one's life, learning what risks to take and what ones to avoid, participating as an equal in society

My son knows he has a major part in making his own choices and at the same time knows there is help if needed.

The individuals guardian often takes away chances to be independent and take more risks.

It makes my son feel he is in charge of his life decisions, rather than other people deciding for him.

Son is able to make own choices. We discuss what he wants and then I help him get what he wants.

Person feels less threatened, leaves room for other options.

We do not want to take away our son's rights as to where to live eat and recreate. He is involved in EVERY decision that is made about his life. If he has to make his mark on something I explain what it is and ask him if he wants to sign it. If he declines then he declines. He interviews his staff and HE lets me know who he wants working with him. If once they are hired and it isn't working out he lets me know and we talk about it and if need be they are terminated. I will not place him in a group home as I want to ensure his rights are not violated in any way shape or form. What makes sense to him is to live at home.

I would never take the freedom from my daughter to be included in decision making; she is capable of making choices.

Respondents are telling us what lessons can be learned:

People with DD should be considered competent

Treat people how you would want to be treated if you were in a similar situation.

That Supported Decision-Making is a "lest restrictive" option for consideration by all individuals with disabilities and allows the individual the right to determine where they live, work, attend church, what activities to participate in, how to spend their income, who to be friends with, and who to seek guidance from. By not putting a formal "guardianship" in place allows an individual to maintain their civil rights as given to all others without disabilities. Having a disability should NOT guarantee an immediate loss of an individuals civil rights through a guardianship!

Helps develop maturity

Doesn't have to be an either/or situation. People (all of us!) look to others for info, advice, perspective when we make decisions. Person can have a guardian for those rare times when the person is not able to make the decision himself, and still be his own decision-maker (using input and perspective from others) when he is able.

too often the education system uses the threat of guardianship to achieve their control; many individuals and their supporters are ushered towards guardianship because of school personnel who are not knowledgeable; individual rights of people with disabilities are taken for granted by system, courts, medical personnel and need to defer to people first then their supporters

When you prefer supported decision making you generalize the expectation of competence rather than the opposite.

There should be alternatives to guardianship that do not deems the individual totallly incompetent and allow for individuals to do some self-determination.

There is a lack of relevant information to all parties involved.

The client knows more about themselves than anybody else ever will.

It is important to be person centered. This is time consuming and often people do not have the correct amount of time or do not want to take it. In making any decision for or with a person with an !/DD you have to know their history and capabilities in addition to their wants, needs and goals.

when supported and when their style and methods of communication about themselves and their goals - individuals who are otherwise not allowed to participate in decisions can, indeed, make decisions for themselves

Yes that once education is given and understood people with disabilities can make their own decisions! Individualized support is key

Many lessons should be learned, most importantly, individuals with an intellectual disability are valuable members of society.

we need education for lawyers, family members individuals with disabilities about pros and cons of options when someone has need for specific supports in decision making. We need legislation that recognizes such agreements that go beyond the power of attorney and includes a person's "circle of support."

There needs to be a step in-between no assistance whartsoever and Guardianship. this middle step would be supported decision making, however written in to it that if there are decisions being made which are affected by the DD and could potentially impact their health and well being, the matter will be handled by an independent mediator.

Important to take the time to figure out what person wants and let them learn from bad decisions. It is my son's life, not mine.

I think that everyone needs to be valued no matter what their functioning level is. My son because of his diagnosis' is thought to be in his own world but when things are explained to him he is capable of letting us know what his choices are.

That there should be protections that aren't all or nothing.

I think that when a person presents with some disability in his or her intellectual processing- at whatever age that is - the parent/s or guardian at that point should be made aware of the legality, services and supports that will impact this person the rest of their life.

We need to treat all people with respect.

SDM (in practice) take more time that agency directed services (in practice) but the results are far better for the person and cost effective for the system. It is the only way service delivery support systems should be offering services. The entire service delivery system needs LOTS of training. This is a paradigm shift from business as usual. It is my impression that there is much talk about SDM but monitoring and evaluation of SDM in practice is almost nonexistent.

yes, you need to get to parents before the age of 21 or 18. you need to get more informed info into the schools that send out the letters at 18 and scare parents to death if they don't get guardianship and then they only turn to a lawyer, who only knows the legal route.

Respect, honor, and use as much empathy as can be mustered for the person in my care and service to the individual under my care. Use all my resources to allow her to live as normal of a life as possible. Never assume there is a limitation of her mind and brain. Always remember there is a living, breathing, feeling, and THINKING individual in her body. NEVERTHELESS underestimate the intellect of the individual. The output may not be there, but the processes may.