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Once In A Lifetime Legislative Session

Posted on 23 June, 2020 at 11:20 Comments comments (25)

Policy and Advocacy Summary and Update

The Arc of Iowa Advocacy Committee

June 24, 2020

In August 2019, I was excited to be asked to become The Arc of Iowa policy and advocacy liaison. My own personal journey involving my daughter, Katie, sealed that this was a match for my passion and the needs of 94,000 Iowans with intellectual and related developmental disabilities. I have been grateful for the opportunity! The overarching goal for this position is that, through the combined strength of Arc chapters, Arc members and like-minded partners the lives of individuals are adequately supported in the community.


In the months since then I share that there has never been a time quite like this – at least in my lifetime. In August it appeared that we were developing a plan for relationship building, broader awareness and potential new partners at the state legislature. COVID 19 knew nothing about “our” plan. In spite of a pandemic I feel proud of the progress we made.


Let me share the following timeline that supported our initial goals.

August 2019


  • Teamed with Michael Wood, Arc of Iowa board member to lay foundation for committee and form a “traveling” team to be at capital and other chapters of the Arc as necessary,
  • Description for advisory committee – to be comprised of Iowans who will help frame the initial priorities, build a plan of action and assist in promoting policies that support the needs and dreams of Iowans with disabilities
  • Arc of Iowa met with Liz Matney, health advisor to Governor Reynolds to discuss issues that Iowans are experiencing with MCO services. Attempted to create a pathway to have continued conversation to improve services and outcomes.
  • Maintained my active participation on several national fronts – Family Voices, Families USA, HRSA,


September 2019


  • Seated Advisory Committee – Former legislators, Dave Heaton of Mount Pleasant and Lisa Heddens joined Paula Connolly, Michael Wood, Delaine Petersen, Doug Cunningham and me to execute the activities necessary to build a collaborative relationship with policy makers of both parties and with the Managed Care Organizations.
  • Identified 4 action items for the coming session – Outreach, Identify the players, Advocacy, and Direct Care Need issues.
  • Set a time line for meetings. Drafted a letter of introduction to all the legislators and heads of the MCO’s.


 October 2019


  • Members of the advisory committee, Dave Heaton, Michael Wood and I, met with lowa Total Care and Amerigroup lowa. Both were very appreciative of our concerns and want to be able to reach out to us if we hear of concerns. Our contacts included -ITC-Stacie Maass, V P of Legislative/ and Government Affairs and Bryan Sanders VP, Long Term Care/ Product Development; Amerigroup-Kyle Carlson, Government Relations Director, Blaine Beatty the ombudsman Liaison, and John McCalley program director
  • Met with Liz Mathis to discuss social determinants of health as potential outcome measures and a method to improve Medicaid services under the MCO’s. Over the course of several meetings, her listening posts, calls and emails, we addressed the shortage of workers, the Governor’s proposed “Last Chance Education Grants” and the hiring of a new DHS director.
  • Initiated contact with Karen Somerville in Senator Grassley’s Washington office. Explored ideas, both legislative and policy, to increase direct care workers in the United States and Iowa, in particular
  • Drafted an introductory letter to all members of the legislature to be sent at opening week. Created a brochure that was “picture story” and easy reference for senators and representatives.
  • Continue to do out of state training for parent groups. This has been helpful to see how other states deal with worker shortage, reduced services and parent stress.


 November 2019


  • Received notice of The Arc of US Disability Seminar and made plans to attend in March. Appointments with Grassley and other key legislators will be set.

December 2019

  • Information about changes to guardianship and conservatorship. Worked within Arc of Iowa network and the University of Iowa to learn how to inform/educate membership. 
  • Helped plan training for January 2020.
  • Continued to research ways to address worker shortage and utilized data to fully understand challenges in securing a larger work force in Iowa.
  • Finalized introductory letter to state legislators
  • Started to plan for meetings with ranking members of House and Senate Human Resources and Appropriations committees.
  • Design method to renew old political acquaintances and establish new ones.


January 2020


  • Letters and brochures presented to all members of the legislature.
  • On January 10, The Arc of Iowa hosted a training session for guardians, conservators and other interested parties at Mercy Medical Center in Cedar Rapids. Several Arc of Iowa board members drove a great distance to be there. Josy Gittler, a law professor at University of Iowa was presenter. She was the research to legislators in the revision of the law and is considered to be expert. Arc of Iowa will provide resources or mentor with Dr. Gittler as needed as members begin to complete documents.
  • One of the goals of this legislature was to have a short session because it is an election year (little did they know how the session would really play out).
  • Along with my board partner, Michael Wood, nearly every Tuesday and Wednesday in January were spent in committee meetings. We successfully met several key legislators one on one. We were received respectfully and felt we could look to the 2020 – 2021 session and bring forward some ideas that would be listened to based on good relationships.
  • One of the most important sessions was a joint Health and Human Resources appropriations committee meeting.  Learned updates on the MH and Disabilities Regions. There are some jurisdictional issues amongst counties but these are trying to be changed. An important proposal to coordinate services for children and youth with severe emotional disturbance, suicide prevention and early intervention services and their approach to centralized programs meeting student and school needs Watching bills including the MH/Disability Regions HF 2151 and HF2254 around the last chance scholarship programs eligibility. The last chance scholarship programs eligibility is looking at training or those over 20 years old.  Can this help individuals with I/DD find a path to employment?
  • A highlight within this month was meeting several key people from the Department of Human Services and the new director, Kelly Garcia. In the next 2 months we will make appointments to meet with her. Her confirmation should be soon.
  • As January progressed, it was obvious that the caucuses were on the minds of legislators. With the Arc of Iowa we began pushing messages to engage the membership. Posts were sent to register to vote, attend the caucuses and be part of the political process was our effort the last week of January.


February 2020


  • A Disability Day at the Capitol that was to highlight direct care issues, service needs and changesAttended se in legislation did not happen due to a bad storm in Iowa.
  • Our caucus night caused confusion after the many errors that occurred in reporting results.
  • Continued to work with Senator Grassley staff and finalized meetings for March 2020 in Washington.
  • Mike and I continued our weekly session visits but there were concerns growing about the “new” virus.
  • Funnel week occurred February 17 so we wait for the coming week to see what makes it out of committee.
  • I was able to make a meeting with Jody Donaldson from Kirkwood (also Arc of ECI board president) to discuss Governor Reynolds educational initiative. I invited Delaine Petersen to join. We had a great meeting and were able to secure 4 contacts at Kirkwood. We will reconnect with Liz Mathis and then schedule discussions of how to include people with IDD/DD in the concept. We plan for early to mid March.


March 2020


  • COVID19 arrives in Iowa. Being in the “susceptible” age range and having vulnerable people in our lives, Mike and I did not go to the session the first week
  • The session was suspended as was most of society except for essential services.
  • The Arc US disability seminar was cancelled.
  • My focus became to look at funding sources, continue to research best practices and ideas in other states; and through connections in Washington, CDC and Arc US.
  • The Together We Can conference is cancelled. This conference had a track to helps self-advocates become informed and empowered.


April 2020


  • With the closure of the legislative session, I spent April working with board and chapter representatives to develop ideas to strengthen the voice of people with disabilities and their families. In the last 15 years there are few foot soldiers available to “tell” their stories, attend local listening posts or legislative forums.
  • I began to review several federal programs in Iowa and other states to learn how Arc of Iowa might expand its advocacy reach. Through Martha Handley at the University I was able to be connected with some names of younger families who must be cultivated to be the future of the Arc.
  • I continued to confer with Senator Grassley staffers and like the rest of the world, the pandemic has reduced activities.
  • As the first stimulus payment was authorized, Arc US raised the awareness that people with disabilities have been left out. Need to monitor proposed legislation and be ready to have people reach out to their nationally elected officials.


May 2020


  • Attended several conference calls about the subjects of a) ways to keep advocacy happening, b) protecting people with disabilities in future funding for COVID19, c) watch for funding cuts, d) growing a chapter in central Iowa that can provide human resources at the state capital in a time manner, e) start a roadmap for any activity at abbreviated June session.
  • Contact grant funders and uncover funding priorities for the next year.


June 2020


  • Worked with Doug, Paula and Delaine to recruit a group of young families to become better advocates.
  • The session reconvened and Michael and I reached out to our contacts at the state house. WE were informed that visitors were not going to be encouraged if allowed at all. It was further stated that the work of the state house would be focused on getting a budget passed and some clean up work.


The Future

I will be spending the summer preparing a work agenda for the next session. Any thoughts are most welcome.

Scope of Work - What do we focus on?

Resources to Become Educated, Empowered and Engaged

Ways to Keep Advocacy Happening – new chapters expanded members (foot soldiers)

Nobody’s going to move that agenda for us. That’s why we must build independent and compelling advocacy. It’s up to us to engage and deliver One way to do that is by meeting with your elected officials, expanded opportunities for people with disabilities by reducing barriers, changing perceptions, and increasing participation in community life.

Collectively, Iowans with disabilities could make up one of the state’s largest blocs of influence; however, research shows that a lack of confidence, apathy and other barriers prevent that. Let’s break those barriers.


Welcome to The Arc of Iowa Policy Committee

Posted on 6 January, 2020 at 9:15 Comments comments (28)

First Report to The Arc of Iowa Network –

By Julie Beckett

Hello, although the legislative session is still just days away, as your policy/advocacy liaison, I want you to know we are already laying the foundation to work on the 2020 goals. The policy committee has designed a process to build relationships, uncover resources and implement partnerships that will produce positive outcomes. We intend to give you timely updates on the progress and develop a way to provide back and forth communication. This will help everyone to monitor and contribute to our success.

Step 1. Meetings are being sought with ranking members for the House Human Resources and Appropriations and the Senate Human Resources and Appropriations Committees. We feel that since The Arc has not had a strong legislative presence for several years it is important to renew old acquaintances and make new friends; and support The Arc membership in presenting their stories. It is time to rebuild our bond with those who make decisions on behalf of our families, children and young adults.

We have done outreach opportunities over the last few months and have followed up with several leads and suggestions presented to us by Senator Liz Mathis particularly in “social determinants of health.” We have looked at the crisis in Direct Care supports for our families and feel that the “Last Chance Education grants” might be useful to those people who are interested in the field but who cannot afford community colleges. This could be expanded to small private school supports.  We also believe that the private non-profit world could and should be helpful to meeting this need for expansion. Several of our Arc chapters that provide services and many other service providers have long lists of individuals needing services but cannot hire people to fulfill the need. Can we establish a career path program that will attract entry level employees and give them help in establishing education and training programs?  This would allow interested individuals to grow in their careers and increase their earnings as they progress through life. Is there a way to establish a non-profit organization to assist in a workforce development initiative that would help resolve this shortage situation in the future?

Step 2. Exploration - Is a way that volunteer labor could be utilized effectively to provide immediate relief? The service provider agency could supervise, train and manage the volunteers.

Step 3. We recognize the hourly reimbursement rate has not increased since the implementation of the MCO programs. This is a contributor to the worker shortage. There must be some way to review this and find economic solutions to help with this crisis. It is clear that Managed Care is not going away in our our state but are there ways that shortages can be addressed?   It it possible to set up programs with the state for tax compensation and other creative ideas to help these agencies--- and the people who need care-- out.

Step 4.  Finally, there is a great communication issue around the MCO’s. While there has been 4 companies in 3 years, we know that confusions, frustration and fear exist. We want to be planful. The Arc wants to set a format that delivers messages that prompt dialog and resolution. We want to help people present the facts, in a limited format that does not just place blame but finds solutions. When the HCBS waivers were first authorized 30 years ago, it happened through collaboration. Energy was spent on working together. We worked hard not to place blame that the government was ignorant or against people with disabilities.  The intention was to educate and show how important this program was…and better yet help them to improve them.  As a result, across America, every state successfully implemented programs for those with ID/DD diagnosis. We have had many gains and we will have more.

As I shared in the introduction, we must help our most vulnerable citizens to improve their lives and join in our communities-Direct Supports are critical. In the coming weeks, we will share AND ask for your inputs, stories and partnerships. The Arc is committed to be the BEST advocate for 94,000 Iowans by understanding current policy and creating new and improved ways to support individuals.



Arc Advocacy - Direct Support Professional Crisis

Posted on 14 November, 2019 at 7:30 Comments comments (1)

Direct Support Professionals are the backbone of publically funded long-term supports and services for people with intellectual and developmental disabilities (IDD) such as autism, cerebral palsy and Down Syndrome. These professionals are integral to helping individuals with disabilities live successfully in the community, avoid more costly institutional care, and enable states to comply with the integration mandate of the Americans with Disabilities Act.


According to the National Core Indicator's 2016 survey of 17 states, the average turnover rate for direct support professionals is 45 percent. This frequent churn of staff is highly disruptive to the development of skills critical to gain independence and access community living, compromises health and safety, and is increasingly impacting the ability of states and providers to serve people and families on waiting lists for services. This affects individual and family income, health and safety, and participation in society.

In order to cast a spotlight on the Direct Support Professional workforce shortage, which is a national public health crisis, ANCOR has written a report on its causes and potential solutions. Click here to access the full report and a summary.

Arc Advocacy - Managed Care Organizations

Posted on 4 September, 2019 at 18:40 Comments comments (118)

The Arc of Iowa Board of Directors and I would like to thank Liz Matney for taking the time to meet with us, listen to concerns over issues relating to the implementation of Managed Care and how it is affecting individuals with Intellectual and Developmental Disabilities.  The Arc of Iowa is an advocacy organization that supports individuals with Intellectual and Developmental Disabilities and we have been hearing that their are many challenges in the system from our local members. 

In response to the article in the Bleeding Heartland Blog, we would like to re-state our impressions of the meeting.  We did not feel that Liz or the Governor were claiming ignorance to the issues but that they have not been hearing from families that their needs are not being met by managed care.  Since the meeting we released a statement outlining what was said at the meeting and recommending how you can improve the system if you are not getting results after working with your Managed Care Provider. 

We have found Liz to be responsive and willing to assist individuals with disabilities, families and/or care providers in finding results.  We stand behind our press release and advocate that individuals who are not getting results through regular manage care channels reach out to Liz, your local legislator and advocacy organizations to support you in accessing the services that you need.  

You may read the contents of the story and our press release here.