2017 Issue #2

Issue 2, 2/4/2017

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The House and Senate are off to a fast start this year.  Dozens of subcommittee meetings have been held, and the Senate has already jump started its work with floor debates on controversial issues.  

Senators debated the bill that would end state funding to Planned Parenthood and other abortion providers, passing a bill that would replace the state Medicaid family planning waiver with a new state-funded family planning program.  Hundreds of supporters and opponents of the bill crowded the State Capitol - supporters in black, opponents in pink flooded committee rooms, stairwells, galleries, and just about any open space.  It was loud,as the crowd shouted, "this is what democracy looks like."  

Not shying away from the controversy, the Senate also took up a drug testing bill that allows employers to test hair samples, as well as urine and blood samples.  Some say this allows for better testing, others say it is less accurate. The Senate closed out its work for the week by taking action on the "must do" legislation to set school spending for the next year.  The Senate passed a bill to increase school funding by 1.1%.  The Governor had recommended 2%, but schools say they need at least twice that much to get by next year.

These three issues have generated a lot of activity; the Capitol has been loaded with protestors every week, and legislators have been forced to continue committee work until late at night in order to continue moving bills forward.  Late night committee and floor debate is usually rare this early in the session, but it may be the new normal as new leaders show their support for issues that they were not been able to pass when Democrats controlled the Iowa Senate.

It's good legislators are moving quickly this year, because they also passed a resolution to cut the 2017 session short. Instead of being paid for 110 days of work, Iowa's legislators will only get expense checks for 100 days.  By cutting their salaries, legislators were able to save taxpayers $600,000 in the deappropriation bill (which cuts state spending in the current fiscal year by $117 million).  That doesn't mean legislators will end at 100 days (April 18, 2017 - which also happens to be the day your taxes are due) - they just won't be paid expenses for staying in Des Moines to work.

Legislators did not change other deadlines:

  • Last day for legislators to request bills is still Friday, February 10.
  • Last day for bills to get out of their committee of origin is still Friday, March 3.
  • Last day for bills to get out of one chamber, then get out of committee in the other chamber is still Friday, March 31.

Another "must do" bill got the Governor's signature this week.  Governor Branstad has signed Senate File 130, the deappropriations bill.  This bill cuts $117 million in appropriations to programs in this current fiscal year, which ends on June 30, 2017.  State departments that thought they had a certain amount of money to spend this year will have to adjust, which means programs could be affected.  Here is a quick review of the cuts:

  • $88 million in cuts to programs, including:
    • $2 million from Iowa Department of Public Health
    • $22 million from Iowa Department of Human Services
    • $13.9 million from Medicaid 
    • $11.5 million in "state operations" (to be determined by Governor in consultation with departments)
  • $25 million in business tax credit transfers.
  • $4.5 million in unused property tax credits (so state doesn't need to reimburse local governments as much).

The cuts hit most of state government – except K-12 schools and a few other areas - with a 4.5% reduction this year. The Governor keeps these cuts in his next two years of budget proposals - so the cuts are here to stay if the Governor's budget is enacted for fiscal years 2018 and 2019.  If you want to know more about the Deappropriation Bill, you can review an analysis by the non-partisan Legislative Services Agency here.

On a lighter (and less controversial) note, legislators in the House enjoyed a brief retreat from the serious issues last week when Rep. Rob Bacon  was able to get House colleagues Rep. Tom Moore and Rep. Joel Fry to collaborate on a resolution to honor Iowa’s pork producers.  

House Resolution 3 was introduced by “Fry, Moore, Bacon” and passed on a voice vote.

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CMV is not just another acronym - it's a disease that few people know about, but is the leading cause of developmental disabilities.  It's also a new issue for Iowa lawmakers, who have introduced three bills to bring more awareness and resources to the issue.

  • Senate File 51 is sponsored by Sen. Brad Zaun (R-Urbandale), and it is a bit different than the other two bills.  This bill does not include funding for a public health initiative, but does require the Center for Congenital and Inherited Disorders to work with state and local health agencies and others to develop materials to educate and raise awareness of cytomegalovirus.  The bill also requires newborn screening and directs health care providers to give pregnant women information about the disease, and public health agencies to give educational materials to child care providers, school nurses, and others.  The bill has passed out of subcommittee; the full Senate Human Resources Committee plans to vote the bill out of committee on Monday (February 6). Those supporting passage out of subcommittee were Sen. Jake Chapman (R-Adel), Sen. Craig Johnson (R-Independence), and Sen. Pam Jochum (D-Dubuque)

You can learn more about this issue in our next article.  If this issue is important to you - contact your legislators and the members of the House and Senate Human Resources Committees, and ask for their help to pass legislation addressing this issue.  Click here to use our Grassroots Action Center to email your legislator.

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GUEST EDITORIAL: Understanding Cytomegalovirus (CMV)

By Kristine Dreckman 

Cytomegalovirus, or CMV, is highly contagious.  Almost everyone has come into contact with CMV.  In fact, the United States Centers for Disease Control estimates that between 50 to 80 percent of our population have experienced a CMV infection by the age of 40.  Yet few have heard of the virus.  It causes symptoms similar to the common cold, such as sore throat, fatigue, and swollen glands.  A common way for parents to contract CMV is through sharing cups and utensils with their young children. 

While CMV is relatively harmless for an otherwise-healthy adult, it can have devastating effects for babies who contract the virus before birth.  This is known as congenital CMV.  Congenital CMV can cause hearing and/or vision impairment; microcephaly; problems with coordination; intellectual disability; speech impairment; feeding issues; sleep disorders; seizure disorders; and, in some cases, death.    Congenital CMV is the leading cause of developmental disability

Our family only recently learned about CMV.  Nora Claire, our second child, was born in July 2013.  There were some red flags during the pregnancy.  Ultrasounds showed that Nora potentially had something called an “echogenic bowel”, enlarged ventricles in her brain, and that her head size was smaller than normal.  We consulted with a number of obstetricians and perinatologists during the pregnancy.  All assured us that there was most likely no reason to worry.

Nora was born small for her gestational age.  She had petechiae, or a “blueberry muffin” skin rash, on her face.  At about a day old, she briefly struggled with respiratory distress.  However, pediatricians remained unconcerned about her health. 

During her infancy, there were things that worried us.  But it wasn’t until she reached 9 months that her pediatrician took our concerns seriously.  Nora underwent an MRI that showed damage occurred to her brain before she was born.  Shortly thereafter, we discovered that Nora lost hearing in her right ear.  

Nevertheless, it wasn’t until she was two years old that a physician accurately diagnosed her with congenital CMV.  As it turns out, what we had observed during the pregnancy and shortly after Nora’s birth were classic signs of congenital CMV.  The physician also educated us about appropriately monitoring Nora for potential future complications known to be caused by the virus.   Lastly, he informed us that is was not uncommon for physicians to miss the signs of congenital CMV during pregnancy and after the birth. 

Our family struggled for over two years to find an accurate diagnosis for Nora.  If her signs and symptoms had been recognized, we could have ensured that there were proper supports in place for her right at birth.  Regular vision and hearing screenings, early childhood intervention therapies, and parental education are critical tools to ensure infants affected by congenital CMV are as healthy and successful as possible.  

The proposed legislation requiring education and screening for congenital CMV is very important for two reasons: 1) to help prevent future cases of congenital CMV; and 2) to identify babies affected by this virus and ensure they are properly supported.  No one can change what happened to Nora and our family, but we can prevent it from happening to others. 


ABOUT OUR GUEST EDITORIAL WRITER: Kristine Dreckman is a member of the DD Council and has served as an administrative law judge with the Iowa Department of Inspections and Appeals since November 2013. She received her undergraduate degree from the University of Iowa in 2002, and her law degree, with honors, from Drake University Law School in 2005. Prior to joining the Division, she was in private practice and worked for the Iowa Finance Authority.

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Funding for locally-managed mental health and disability services (MH/DS) has been an issue for legislators since the state intervened in the system in 1995. Legislators have never been able to pass a plan that secured permanent, sustainable funding for the system that is now managed by 15 MH/DS regions.  

The MH/DS regional system is now at an important crossroads.  If a long-term solution to funding is not passed this year, services that help thousands of Iowans live and work in their communities of choice are at risk.  The Iowa State Association of Counties and many advocacy organizations are asking Iowa legislators to give counties local control over their MH/DS budgets.  They want locally elected county supervisors to be able to set their property taxes where they need to be to meet the needs of their population - not legislators who are maintaining a system thats funding is frozen at 1995 levels.  

The Iowa State Association of Counties (ISAC) and many advocacy organizations (including the Iowa Developmental Disabilities Council) are working together this year to encourage legislators to allow local control for MH/DS funding.  They are asking legislators to allow counties to set their own budgets and property tax levels for these important, life-saving and life-enhancing services.  

Want to learn more? 

No bills have been introduced yet, but there is a lot of discussion going on right now. As you know, there isn't a lot of money to help at the state level, so this is the year to fix this once and hopefully for all.

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For the past decade, legislators have looked for different ways to pay for various services to individuals with autism. State employee insurance was directed to pay for Applied Behavior Analysis (ABA) treatment for individuals who are diagnosed with autism.  Trying to avoid a broader insurance mandate, legislators created a state-funded program to pay for ABA treatment.  

This $3 million program has never been fully utilized, mainlly because it takes a lot of time and effort on parents to apply for funding.  They must first show that they have exhausted all appeals with their own insurance providers, and then get written documentation from their insurer that they have denied services (which is hard to get).  Then they must apply for funding, and wait for approval.  Advocates say a much simpler way to address this is to have private insurers pay for ABA treatment, and have a much smaller program to pick up others who are uninsured or are covered by self-insured plans that would be exempt from an insurance mandate.

So after a decade of work, advocates can celebrate (a little...still more work ahead).  The House Commerce Committee passed House Study Billl 41, which requires insurers to pay for up to $36,000/year in ABA treatment for children up to age six, $25,000/year for children age 7-13, and $12,500/year for children age 14-18.  A companion bill (Senate Study Bill 1043) is being considered by the Senate Commerce Committee.  The House bill will be getting a new number and will be ready for debate sometime next week.

Let your legislators know if you support this bill - click here to email your legislators.

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Monica Kurth won the Davenport special election on January 31, becoming the newest member of the Iowa House of Representatives.  Rep. Kurth is a Democrat, so this does not change the makeup of the Iowa House (it remains 59 Republicans, 41 Democrats).  Rep. Kurth, a Scott Community College educator and counselor, beat her opponent by a 3:1 margin (receiving 72% of the vote to her opponent's 27%).  

If you live in this district (House District 89), you can contact Rep. Kurth at home (563.271.9332; 1933 North Marquette Street, Davenport, Iowa 52804; mkurth10@gmail.com) or using her legislative email (monica.kurth@legis.iowa.gov).

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Our mailed version of infoNET is much more concise than our e-mailed and online version. Click on the image below for the PDF version




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Join other self-advocates at the State Capitol for Advocating Change Day 2017 on Wednesday, April 5, 2017. Register now at  www.idaction.org.

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Know your stuff!  Use our online Bill Tracker to follow bills introduced this legislative session.   Our bill tracker is updated daily, and keeps tabs on bills of interest to Iowans with disabilities.  Just click here to see bills tracked.

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Last year, we tracked over 500 public legislative forums, Congressional town hall meetings, and various elected official listening posts.  So check out our list, and see if there is a legislative forum near you.  These are great opportunities to meet your legislators, introduce yourself, ask questions, or just get more informed.  Click here to find a forum near you.

Our list only shows three weeks at a time, so make sure you check back often.

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