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Letter to Governor Reynolds

Iowa Parents for People is a group of parents with adult children with disabilities. They are working to educate the Governor and members of the legislature about the concerns associated with services in Iowa. This letter specifically addresses the issues related to the coronavirus pandemic.

May 8, 2020

Honorable Governor Kim Reynolds

Office of the Governor Iowa State Capitol 1007 East Grand Avenue Des Moines, IA 50319

Dear Governor Reynolds:

We are members of a group of parents with adult children with disabilities served by Iowa’s Medicaid funded Home and Community Based Services (HCBS) program. Although we each have slightly different circumstances, we all share a growing concern for the safety of our sons and daughters due to the ongoing threat of the coronavirus pandemic. We are writing you in hopes that you will take action to correct three problems that are critical to protecting our people. In order to understand our concerns, we want to describe the events surrounding one of our adult children, Jane (not her real name).

Jane is a 38-year-old woman with an intellectual disability who lives in a small “HCBS” home in Ankeny with 24-7 staff support provided by Candeo, an established and well managed non-profit service provider located in Johnston. Jane’s disability is such that she could not survive without the level of support she is now receiving. These daily support services are provided by Direct Support Professionals (DSPs) - the front-line workers who face the enormous challenge of helping our sons and daughters avoid the coronavirus while meeting all their other daily needs. Twice in the last two weeks DSPs working in Jane’s home were subsequently found to have been exposed to someone confirmed with coronavirus. One was refused testing by the State’s existing test protocol, and one was eventually tested positive after she exhibited extreme symptoms. In both these cases, Jane, her roommate and other DSPs were needlessly exposed to the coronavirus. In both these instances, as soon as the risk was discovered, Candeo took immediate action to remove the DSPs from Jane’s home and prevent their return until it was medically safe to do so. DSPs are currently not eligible for testing beyond what is available to the general public. While we recognize that it’s virtually impossible to eliminate all risk, we must do more to minimize the risk of infection for people with disabilities, particularly those providing daily living supports on a rotating basis. This must include routine, periodic testing for all DSPs regardless of symptoms.

What makes Jane’s situation so risky? In order to provide the necessary support, multiple DSPs routinely rotate in and out of Jane’s home everyday, usually working 8 hour shifts. The job being performed by DSPs under the HCBS program presents an ongoing risk of coronavirus infection similar to the staff working in a nursing home. Although these DSPs have been afforded some Personal Protective Equipment (PPE) and follow the established coronavirus protective protocols, they nonetheless are a potential source of coronavirus infection for Jane and others like her. Moreover, the risk associated with caring for people with disabilities who become infected with coronavirus presents a huge risk for the DSPs who are now thrust into the role of nurse and substitute parent as they care for our sons and daughters. It is a job that carries with it the same challenge as direct support staff caring for a sick person in a nursing home.

There are three specific steps that must be immediately taken to provide desperately needed protection from coronavirus infection for people with disabilities:

  1. Keep the PPE coming! We understand that Iowa’s service providers have been provided PPE for their DSPs, although there is a current shortage of gloves that must be filled immediately. The current PPE allocations are sufficient for about two weeks. It is imperative that the supply of PPE – including gloves – for Iowa’s non-profit service providers be replenished on an ongoing basis beginning in about two weeks.

  2. Improved coronavirus testing for DSPs and our sons and daughters! At present DSPs are not eligible to receive coronavirus testing, and without testing we have no idea if the DSPs have coronavirus or not. Infected DSPs would not have been in my daughter’s home if testing for DSPs had been available, with rapid availability of tests results. It is critically important that DSPs be tested on a regular basis even when they display no symptoms, and certainly when they display symptoms. And the test results must be available before the DSP is in close contact with our sons and daughters.

  3. DSPs need to be fairly compensated for the high risk and demanding jobs we are asking them to perform! We recognize that the government has provided PPP loans to help cover wages and hazard pay for this pandemic. We also recognize that PPP loans will not last forever, and a permanent fix is required. DSPs in Iowa are currently compensated $11.28/hour in Iowa’s urban areas, and $10.94 in rural areas, with a small increase for hazardous duty when coronavirus is present. This is a non-competitive wage rate and makes it impossible to attract and retain qualified staff at our HCBS facilities, particularly now when we are asking DSP to work in highly demanding and high-risk environments. To help illustrate the magnitude of the problem, here are three jobs in Iowa that pay significantly more than our DSPs: A cashier at ALDI’s is paid $13.94, patient care staff at Woodward and Glenwood are paid $24.41, a worker at McDonalds is paid $12.50. We must do something about this now. Iowa has access to an additional $102.5 million in Federal Medicaid dollars (with an Iowa match) which should be accessed and used to provide a $4.00/hour wage increase for Iowa’s DSPs. These additional funds must be obtained and utilized to support DSPs wages. Without additional wage support, Iowa will not be able to provide the DSPs required to adequately staff the many HCBS homes across the state of Iowa.

We are painfully aware of the enormous challenge that we all face in defeating the ravages of coronavirus. However, the challenges faced by the most vulnerable among us often go unnoticed and unaddressed. We urgently request that you take affirmative action on the three areas outlined above. We look forward to hearing from you about implementing our recommendations.

We are available to discuss this letter and any related issues. Please contact Richard Clark at 515-202-8316, or by email at RACNDM@ME.COM.



Richard Clark

Deb McMahon

Kay Marcel

Bill Stumpf

Rick Durham

Email copy to:

Senator Charles Schneider

Senator Jack Whitver

Senator Janet Petersen

Senator Annette Sweeney

Senator Mark Segebart

Senator Liz Mathis

Representative Pat Grassley

Representative Matt W. Windschitl

Representative Todd Prichard

Representative Shannon Lundgren

Representative Ann Meyer

Representative Beth Wessel-Kroeschell

Note: Data contained in this letter was obtained from the Iowa Association of Community Providers.

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