Iowa Advocacy Connection | 2020, Issue 3

Issue 27, 8/30/2020

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Articles in This Issue:

Partner Guest Article: Iowa Department on Aging

The Office of Public Guardian is a state government program. It is part of the Iowa Department on Aging. The Iowa Department on Aging supports accessible, integrated services to older adults, adults with disabilities and caregivers to assist them in maintaining their independence, dignity, autonomy, health, safety and economic well-being. The Office of Public Guardian does three things to support this mission:

  • We serve as guardian or conservator for older adults and adults with disabilities who need one if they don’t have anybody else who can be their guardian or conservator.
  • We teach people about guardianship and conservatorship and other types of decision-making supports. We help people understand when a person might need a guardian or conservator and when they don’t. We also help people learn about other ways to help people make decisions.
  • We help guardians, conservators and caregivers learn about their responsibilities and advocate for the people they care for.


What are Guardianship and Conservatorship?

Guardianship and conservatorship are kinds of substitute decision-making. Substitute decision-making means that one person can legally make decisions for another person. Guardians and conservators are chosen by the court. The person they make decisions for is called the “protected person.” Guardians make decisions about their protected person’s personal care. Conservators make decisions about their protected person’s money and property.


Why Would Someone Need a Guardian or Conservator?

Adults have the legal right to make their own decisions about things like where they live, how they spend their money, where they work or go to school, who they spend time with and what medical care they receive. Sometimes an adult might have trouble making decisions about things in their life. There are lots of different ways to help someone make decisions. If those ways don’t work and the person cannot make decisions about important parts of their life, they might need someone else to make decisions for them. If that is the case, someone might ask the court to name a guardian or conservator.


Does Everyone Who Has a Disability Need a Guardian?

No! It is a myth that people who have disabilities always need a guardian or conservator. Some people believe that a person with an intellectual disability, developmental disability, mental illness or dementia will need a guardian or conservator, but this simply isn’t true. Most adults with disabilities can make decisions. Some might need help making decisions, but that is true for adults without disabilities too. Some adults with disabilities just might need more help or different types of help. Guardianship and conservatorship should be the last resort. They should only be used if other types of help have not worked.


What Are Some Other Ways to Help a Person Make Decisions?

There are a lot of ways to help a person make decisions. We can put them into two categories. One is called “supported decision-making.” The other is called “substitute decision-making.” Supported decision-making means that a person has help to make decisions but, ultimately, they make their own decisions. Substitute decision-making means that someone else has the legal authority to make decisions for the person.


How Does Supported Decision-Making Work?

Supported decision-making helps a person make decisions. There are many ways a person might need help with decision-making. Other people can help them by doing things like:

  • Gathering information for them.
  • Explaining information in ways that are easier to understand.
  • Helping them think about the pros and cons of different options.
  • Helping them communicate their decisions.

People who help someone make and communicate decisions are called “supporters.” Anyone can be a supporter for someone they care about.


I Want Someone to Be My Supporter, but Places Will Not Give Them Information About Me. What Can I Do?

Privacy rules protect certain kinds of personal information. Privacy rules keep doctors, lawyers, banks, schools and government programs from sharing personal information that people might not want shared. This can make it hard for a supporter to get information about the person they are supporting. This is a common problem, but it is easy to overcome. The person who wants help can give these places permission to share information about the person with their supporter. One way to do this is to sign a paper called a “release of information” telling them what information they can share. Using a release of information makes it clear what information you want shared and what information you want kept private.


I Want Help Making Different Types of Decisions. Can I Have More Than One Supporter?

Yes! If a person needs help making many kinds of decisions, they might want to have more than one supporter. They can have as many supporters as they want. Sometimes it is helpful to form a team of supporters. This team could include family members, friends, service providers, case workers, religious leaders, employers or teachers and other important people in the person’s life. Even a guardian or conservator can be a supporter and be part of the team. Each supporter might help the person with certain kinds of decisions, or the team might work together to help the person make decisions. The team might work together to write up a plan so that everyone understands how each team member will help support the person.


How Does Substitute Decision-Making Work? 

Sometimes, a person is unable to make decisions even with the help of supporters. In these cases, it might be necessary for someone else to make decisions for them. A person who can legally make decisions for someone else is a substitute decision-maker. Some substitute decision-makers are chosen by the court or by a government program. Other substitute decision-makers are chosen by the person they will help.


If I Need a Substitute Decision-Maker, Can I Choose Who It Will Be?

Yes! There are a couple of ways this can be done.


Power of Attorney: A person can give someone else “power of attorney” to make decisions for them. There are two types of power of attorney used in Iowa: durable power of attorney for healthcare and general power of attorney. A person can use the durable power of attorney for healthcare to name someone who will make medical decisions for them if they are unable to make their own medical decisions. A person can use the general power of attorney to name someone to make decisions about their financial matters, such as money and property. The person who names someone else to make decisions is called the “principal.” The person who is named to make decisions for the principal is called the “agent.”


Standby Guardianship: A person can also use a “standby” guardianship or conservatorship. A standby guardianship is one that is set up before the person needs it. For example, it might be used by an older adult with dementia or a person with a medical condition that will get progressively worse. Right now, they can make their own decisions, but they know that will change in the next few months or years. They can ask the court to set up a standby guardianship. They can tell the judge who they want as their guardian or conservator. The judge will appoint the guardian or conservator but will not let them make decisions for the person just yet. The guardian or conservator will only be able to make decisions when the person is no longer able to make their own decisions. The judge will tell the guardian or conservator how to know when that happens.


Will a Substitute Decision-Maker Make All My Decisions for Me, or Can I Still Make Some Decisions for Myself?

It depends. Some substitute decision-makers can only make certain types of decisions. For example, the Social Security Administration can name a “representative payee” to manage Social Security and SSI benefits for a person who cannot manage their own benefits. This is a kind of substitute decision-making where the representative payee can only make decisions about the Social Security and SSI benefits. A power of attorney can be used to give an agent authority to make many kinds of decisions, or it can be used to give an agent authority to make just one or two kinds of decisions.


Guardians and conservators usually make many kinds of decisions for their protected person. Sometimes the court will only let a guardian or conservator make certain decisions for their protected person. This is called a “limited” guardianship or conservatorship. This happens when the protected person can make some kinds of decisions but not others. The court should only let the guardian or conservator make decisions the protected person is unable to make.


Guardians and conservators have a responsibility to help their protected person make as many decisions as possible. A good guardian or conservator will involve their protected person in making decisions. Even a person who cannot make complex decisions can usually make some day-to-day decisions, such as what to wear, what activities to do, what to eat or who to hang out with. They can also tell their guardian what things they like and don’t like and how they want their life to be. The guardian or conservator can use that information to guide their decisions.


How Do I Contact the Office of Public Guardian?

You can contact the Office of Public Guardian by calling the Iowa Department on Aging at 515-725-3333 or toll-free at 800-532-3213, or you can email

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Make Your Mark! Conference 2020: “Your Vision for the Future!”


This year will mark the sixth annual Iowans with Disabilities in Action Make Your Mark! Conference. The last five conferences brought Iowans with disabilities, direct care support professionals, parents and family members and other disability advocates together to develop skills and find resources to live our best lives.

The Iowa Developmental Disabilities Council and Iowans with Disabilities in Action recognize the work you are doing to keep up with the news, CDC recommendations and your local leadership to make difficult decisions about what is best for you and your family. Since there is still so much we don’t know about what the coronavirus activity will be in the fall, we have made the difficult decision to move the Make Your Mark! Conference to a virtual event. We take the safety and health of our attendees, staff and community very seriously.

We are working to create a robust virtual conference using the theme of “Your Vision for the Future,” We are very excited to announce our keynote speaker will be Kayla McKeon, manager of grassroots advocacy at National Down Syndrome Society on Advocacy.

Registration for Make Your Mark! 2020: Your Vision for the Future, a Virtual Experience, will open on July 1, 2020. The first 150 people to register will receive a FREE conference T-shirt — so don’t wait! Please look for more details on registration for this virtual event in the coming weeks. Thank you for your cooperation, understanding and faithful support during this time. We are excited to (virtually) connect with you all again!

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DD Council Member Spotlight: Mark Smith

Mark Smith lives in Bettendorf, Iowa, with his wife Vinnie, who is a third-grade teacher. Mark has two sons, Peter (31) and Patrick (26).

“I am honored to join the Iowa Developmental Disabilities Council and hope to contribute to its important mission. Several interests and experiences have drawn me to this advocacy group. First and foremost, I am a parent of a young man with autism, named Peter. My journey as a parent has presented many difficult challenges familiar to so many other Iowa families. Nevertheless, my son’s story is also one of many joys and successes. For example, Peter works at a local technology firm, contributing to their business’ success and helping them create an inclusive culture. It is a wonderful place to work and he loves this job, which is evident when he wants to celebrate his work anniversary as much as his birthday. In addition, Peter is also an artist. His one-of-a-kind style has stimulated many conversations with the public about autism-related topics and his unique abilities. I think my experiences as a parent have been my greatest motivation to become a community advocate.  

“My second life experience that has stimulated my interest in joining the DD Council is having founded, with my wife Vinnie and other parents, a nonprofit called Hand in Hand. Twenty years ago, our Quad City community had few program options for individuals with disabilities and their families. With the help of other eager families and volunteers, we offered a one-week adapted day camp for 40 children in 2000. From that modest beginning, Hand in Hand grew to offer year-round respite services for 800 participants and family members in 2020. I retired this spring after 20 years as CEO of Hand in Hand, but my passion for this work continues. I hope my experiences navigating the world of community programs and state regulations as well as being a service provider will be useful to the DD Council team and its vital work.”

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Voter Training and Education Grant Opportunities

Iowans with Disabilities in Action, a project of the Iowa Developmental Disabilities Council, offers statewide trainings to educate Iowans with disabilities, family members, advocates and service providers about their rights and responsibilities in the electoral process. Iowans with disabilities have an opportunity to make an impact in the upcoming election. Iowans with Disabilities in Action is committed to providing the education and resources needed to encourage and increase participation.

Voter Trainings

Voter trainings are designed to educate and inform attendees of their rights and responsibilities as voters. We will cover the most common barriers that we know prevent Iowans from voting and focus on ways to overcome them. The training also provides participants the opportunity to become comfortable with using accessible and other voting equipment. Attendees will be able to register to vote and request absentee ballots.

Voter Training Requirements

Iowans with Disabilities in Action is committed to delivering a successful training to your group. The following requirements have been established to create a training that is informative and provides all participants with a chance to fully participate.

GROUP SIZE: Your group must consist of at least 15 people and no more than 30. If you have more than 30 people who are interested in attending a voter training, we will conduct a second training.

COUNTY AUDITOR: We ask that you invite your county auditor or a representative from the auditor’s office to attend the trainings. This individual is the expert when it comes to election laws and is a great resource for all attendees. Let us know if you need assistance reaching out to your county auditor.

LOCATION: Due to COVID-19, all voter trainings will be held virtually. You will need access to the internet, a computer and the ability to project the presentation to be shown to the group. We are happy to provide technical assistance prior to the training to help you prepare.

Learn more and download the application at


The deadline has been extended to October 1, 2020, or until funds are depleted. Learn more and download the application at

Iowans with Disabilities in Action is a statewide project of the Iowa Developmental Disabilities Council dedicated to increasing the civic participation of Iowans with disabilities. We are excited to offer grant funds to local advocacy groups that are led by people with disabilities who want to take action in their communities to increase voter turnout among Iowans with disabilities. Activities of grantees must be nonpartisan and encourage individuals with disabilities to vote in the 2020 general election, raise awareness and educate elected officials and/or candidates on disability topics.

Available Grants

Grants are available in varying amounts between $100 and $1,500. Local advocacy groups are encouraged to apply for any size grant they feel will have an impact on their community. Great ideas that have a big impact don’t always carry a big price tag. Grant requests must include a plan detailing how it will be put into action. Grant funds are provided as reimbursement for actual expenses. Receipts for all expenses must be submitted to Iowans with Disabilities in Action along with a final report before being reimbursed. Grants may be awarded for a portion of the proposed activities.

Grant Requirements

As an Iowans with Disabilities in Action grant recipient, you will be required to:

  • Complete the grant application, including a plan and proposed budget.
  • Sign the grant agreement.
  • Provide a final report within three weeks of the conclusion of grant-related activities. The requirements of the final report will be based on grant activities and will be included in the agreement.
  • Provide receipts for grant-related expenses.

All grant-related activities must adhere to all public health guidelines provided by both the state and the federal government.


Groups that include people with disabilities, family members, friends and advocates are eligible. Groups should be dedicated to supporting and encouraging those with disabilities to get involved in the electoral process and/or educate elected officials and candidates on disability issues. Groups may be formal or informal, but a majority of the members must be people with disabilities.


Grants will be provided to allow local advocacy groups to take action in their communities. We want you to be creative and submit proposals that describe how your group will encourage and support community members with disabilities to get involved in the election process and/or educate elected officials and candidates.

All grant-related activities must follow both state and federal public health guidelines related to COVID-19. Grants will be reviewed on the following:

  • How many individuals with disabilities, elected officials and candidates will be reached through the grant?
  • How will you reach Iowans with disabilities in light of COVID-19?
  • What will people do differently as a result of this grant?
  • Does the application provide evidence that the proposal will work?
  • Does the budget make sense for what is proposed?

To apply for an Iowans with Disabilities in Action grant, you will need to complete and submit the grant application by the deadline of October 1, 2020, or until funds are depleted. Learn more at

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