Iowa Advocacy Connection | 2020, Issue 1

Click "View Attached PDF" located above the article title to download an information packet developed by and for people with intellectual and developmental disabilities.

What's inside:

• What is COVID-19?
• How do you get it?
• What happens if you have it?
• If I am sick, when should I call a doctor?
• How sick do you get?
• How can I stay healthy, or not get it?
• If I am sick, what should I do?
• If my staff person is sick, what should I do?
• What do I do if someone I live with gets sick?
• How do I say "Hello" to my friends?
• Where can I go these days?
• Why is it important to do all of this?
• Is there a shot I can get so I do not get sick?
• Is there a medicine?
• What do I say to my friends if they get scared, or very nervous?
• I have a job and I am worried about missing work.
• Make a plan in case you have to stay at home.

Disability Rights Iowa is a non-profit law center that protects and advocates for the rights of Iowans of all ages with disabilities, including Iowans with mental illness. DRI’s vision is that all Iowans with disabilities or mental illness have the opportunity to live, work and learn in the most integrated settings, with the supports and services they need, free of abuse, neglect, stigma, and discrimination. Below are answers to some questions you might have about DRI:

How did protection and advocacy systems, like Disability Rights Iowa, get started?

In the 1970s, a reporter named Geraldo Rivera exposed severe abuse and neglect of individuals with developmental and intellectual disabilities at the state-operated Willowbrook State School in New York. https://www.youtube.com/watch?v=rPBhuaxpL90. Congress reacted by establishing a system of protection and advocacy agencies in each state and territory to protect and advocate for the rights of individuals with developmental and intellectual disabilities in each state and territory. Over the years, Congress expanded the responsibilities of protection and advocacy agencies to include legally-based services for individuals of all ages, with all types of disabilities, including mental illness. Collectively, the network of 57 protection and advocacy systems is the largest provider of legally-based services to individuals with disabilities in the country.

What is Disability Rights Iowa?

The protection and advocacy system in Iowa is called Disability Rights Iowa (formerly Iowa Protection and Advocacy Services). DRI is an independent non-profit organization with a 15-member Board of Directors. DRI is not a federal or state agency. DRI currently has 18 employees, including attorneys, advocates, benefits planners, representative payee reviewers, a communications coordinator, an intake specialist/outreach coordinator, and financial/administrative staff.

How is DRI funded?

Most of DRI’s funding comes from federal grants. DRI currently has 9 federal grants from three federal agencies: the U.S. Department of Health and Human Services; the U.S. Department of Education and the Social Security Administration. DRI also receives private donations. There is no charge for DRI’s services.

What services does Disability Rights Iowa provide?

DRI provides information, referrals, training, advocacy, and legal representation. Although the needs of Iowans with disabilities can be unlimited, DRI’s funding is limited. Therefore, DRI’s Board – with the input from Iowans with disabilities, their families and others - decides what the areas are that DRI should focus on each year. DRI’s Areas of Focus generally include:

• Abuse and neglect investigations and monitoring
• Accessibility
• Assistive Technology
• Benefits Planning
• Community Living
• Education
• Employment
• Guardianship Alternatives
• Health Care
• Housing
• Juvenile Justice
• Preventing Abuse, Neglect or Financial Exploitation by Representative Payees
• Prisons and Jails
• Voting Participation

Within each of these areas, DRI’s Board directs DRI to work on specific issues each year. For example, in the area of education, DRI focuses on representing students with challenging behaviors who are being expelled, suspended, arrested, restrained, secluded, or placed on a shortened school day for more than ten days. For a complete description of DRI’s areas of focus, go to https://disabilityrightsiowa.org/what-we-do/complete-list-of-fy2020-areas-of-focus/.

Does DRI also investigate abuse and neglect and monitor facilities?

Yes, Congress gave DRI the authority to investigate abuse and neglect if DRI determines there is a probable cause of abuse and neglect. DRI has extensive investigation authority, including conducting announced or unannounced visits to facilities, privately talking to individual residents, obtaining records with consent or under specified other circumstances and inspecting, viewing and photographing all areas of the facility used by residents. DRI also has the authority to monitor facilities with respect to the rights and safety of residents. Each year, DRI conducts 15-20 investigations and monitors 30-40 facilities each year.

Does DRI also work on systemic projects?

Yes. DRI also conducts systemic projects to improve the lives of Iowans with disabilities. Some of DRI’s current projects are:

• advocating for the caucuses to be accessible;
• identifying the needs and barriers of Latinx special education students;
• investigating deaths at the Glenwood Resource Center;
• identifying and advocating for assistive technology at the Woodward Resource Center;
• preventing suicides in county jails.

How do I request services from DRI?

To request DRI’s services, call DRI at 1-800-779-2502 extension 12 or 515-278-2502 extension 12 or fill out an online intake form at https://disabilityrightsiowa.org/contact-disability-rights-iowa/let-us-help/.

Below is a description of DRI’s intake process:

• An intake specialist, who speaks both English and Spanish, will get basic information about you, your disability and your request for services. If you speak a language other than English or Spanish, the intake specialist will arrange an interpreter for you free of charge. 
• After the intake specialist gets you information, she meets with an intake team composed of an attorney and an advocate to evaluate your eligibility for services under DRI’s federal grants, the applicable area of focus, the merits of the case and DRI’s available staff and resources.

• If the intake team decides to take the case, it will be assigned to an attorney or advocate who will send you an agreement about the scope of services that DRI will provide and a release for information.

• If the intake team declines to take the case, DRI will provide you with information and referrals to other resources. Individuals whose requests for service are denied can file a grievance with DRI’s Executive Director and Board. https://disabilityrightsiowa.org/contact-disability-rights-iowa/grievance-policy/

What are some self-advocacy tips?

• Always keep copies of record, reports and other communications, including e-mails
• Remember, you are in charge of defining the direction of your life, and
• Don’t be afraid to ask questions

Please feel free to call of contact DRI if you need information, referrals, training, advocacy or legal representation. We aim to treat everyone requesting services with dignity and respect and respond to requests for services based on eligibility, areas of focus and the merits of the case.

Every five years our Council writes a State Plan. It describes what we will do and how much money we may spend. We get our money from the federal government, who says we must choose from these areas when selecting what we do: self-advocacy, employment, community living, education, health, housing, and transportation.

We want to hear from you! If you are a person with a disability, a family member of a person with a disability or an advocate for people with disabilities please answer a few questions for us.

Visit https://cvent.me/GVnR7d to take our State Plan Survey now!

In 2020, the Iowa DD Council is celebrating the 50th anniversary of the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). The purpose of the DD Act is to assure that individuals with developmental disabilities and their families participate in the design of, and have access to, needed community services, individualized supports and other forms of assistance that promote self-determination, independence, productivity, integration and inclusion in all facets of community life through culturally competent programs authorized under the law.

During this year-long celebration, the Iowa DD Council will share stories of those positively impacted by the DD Act and the work of the Iowa DD Council. Has your life been positively impacted by the DD Act or the work of the Iowa DD Council? Do you have a story that you’d like to share? Tell us all about it at https://idaction.org/50People50Years/. #50People50Years

March 1 marks the first day of Developmental Disabilities Awareness Month (DDAM). The Iowa Developmental Disabilities Council, in partnership with Iowans with Disabilities in Action, has created a campaign entitled “The Spirit of Inclusion.” This campaign aims to create awareness about the inclusion of people with developmental disabilities in all areas of community life as well as the barriers that people with disabilities still sometimes face in their communities.

“The Spirit of Inclusion” campaign highlights the many ways in which people with and without disabilities come together to form strong, diverse communities. Developmental Disabilities Awareness Month creates the opportunity for everyone to spread stories and share resources highlighting all of the excellent work being done.

Do YOU have a story about inclusion to share? How has “The Spirit of Inclusion” impacted your life? Share it with us: https://idaction.org/DDAM/. #TheSpiritOfInclusion #IowaDDAwareness20 #DDAwareness20

Save the date. We are excited to announce this year’s Make Your Mark! Conference theme: Your Vision for the Future. Look for registration to open around July 1, 2020.

WHERE: West Des Moines Marriott, West Des Moines, Iowa

WHEN: September 24-25, 2020

WHAT: Each year, we bring you the Make Your Mark! conference to prepare you with information to build your self-awareness, confidence, and skills. You learn how to participate, stand up, speak up and connect with others.

And, ultimately, you grow the power to influence others to make decisions that support positive change.

Each year, the governor appoints individuals to serve on the Developmental Disabilities Council. Each person selected serves a three-year term on the Council. Brady Werger is 28 years old and lives in Glenwood, Iowa. “I have lived in a waiver home for 1.5 years now. I work two jobs at the Glenwood Resource Center. I am active in two church praise bands and volunteer in various activities throughout the community,” says Werger.

Werger explains, “I joined the DD Council to advocate for others like me, and I enjoy learning new things through the Council and being able to help others across the state.”