infoNET Winter 2022

Welcome to our first 2022 issue of infoNET, the Iowa Developmental Disabilities Council newsletter that brings you the latest news from our State Capitol.  We have a few changes we wanted to talk about in this first issue.  

• infoNET will now come out four times a year (Winter, Spring, Summer, Fall). Our next issue (Spring 2022) will be in March.  It will be sent out by mail and email, depending on how you signed up to get it.   

• A new weekly emailed report – called This Week at The Capitol – will go out every Monday during the legislative session. That’s every week, instead of the every-other-week schedule in 2021.  This will start up next week.  If you are not getting infoNET by email and would like to get these weekly reports, you can sign up here.

• A new weekly videotaped report from the Iowa DD Council’s public policy manager Bill Kallestad and infoNET writer Amy Campbell. This short video (5 minutes) will talk about the big things that happened that week at the Capitol. So if you don’t have time to read the weekly report, or you just like to get your news a different way, we’ll post this YouTube closed-captioned video every Monday morning.  You can see them here.
  
  
• New updated tools are now on our website – infonetiowa.org. You can find the updated Guide to the Iowa Legislature, new Advocacy Toolkit, and an easier to use Bill Tracker.

• Monthly zoom Capitol Chats will continue this year, giving advocates quick updates and a time to connect with each other and ask questions. 
  • January 28 (11 am) – register here.
  • February 25 (11 am) – register here.
  • March 26 (11 am) – register here.
  • April 29 (11 am) – register here.

• A virtual ADVOCACY 101 session on January 28:  Advocates can grab their lunches after our January 28 Capitol Chat and join Iowa DD Council’s public policy manager Bill Kallestad to learn more about how to tell your story and make change.  The training will follow the January 28 Capitol Chat at 12:15 p.m. – but you need to register here to participate.

We want to make sure infoNET is readable, accessible, and covers the issues important to Iowans living with disabilities and their families.  Five Iowans have volunteered their time to help form our first ever infoNET Editorial Board.  They will give us ideas on the issues to cover and let us know when we miss the mark so we can do better the next time.  Special thanks to these great advocates for sharing their time and ideas with us! 

KRISTIN ALLER is a self-advocate from Cedar Rapids.  She is a member of the Iowa DD Council and a strong advocate for Iowans living with disabilities.

BOB BACON retired as director of the University of Iowa Center for Disabilities and Development and worked in Washington DC on the House Committee on Education and Workforce.

CARRIE MALONE is the DHS legislative liaison and has a law degree.  Before joining DHS, she was the lead health and human services staff person in the Iowa House of Representatives.

ROB ROOZEBOOM is a self-advocate, businessman, motivational speaker, and much more. He lives in Sheldon and is currently on the Iowa DD Council.  You can listen to his story here.

LISA YUNEK is a parent advocate and business owner from Mason City.  You can listen to a podcast she did on parent advocacy here and a video she did on her daughter’s vaccine decision here.

Iowa's 150 elected State Representatives and State Senators are back to work in Des Moines at the Iowa State Capitol.  They will be there for about 100 days, until the middle of Aprill. During this time, they will talk about changes to Iowa laws, work on new laws, hear from experts and Iowans that care about an issue, and pass a budget for the next year.  In Iowa, our state budgets go from July 1 to June 30.  So the budget they pass this legislative session will begin on July 1, 2022 and to through June 30, 2023. 

Speaking of budgets, Iowa has a lot of money in the bank.  Because of extra federal money helping out during the COVID-19 pandemic, the state has managed to save $1.2 billion and put another $900 million in reserves (what they call a “rainy day fund”).  That means Iowa has more than $2 billion in its savings accounts, money that has not yet been spent.

Iowa usually spends about $8 billion each year on education, Medicaid, prisons, courts, roads, and other programs and services.  While we spend $8 billion a year, Iowa gets about $9 billion from taxes each year.  That’s what makes the “surplus” (which is what the state calls the unspent money).  Because Iowa has money that is not being spent, you are going to hear a lot this year about tax cuts.

Some legislators will say that Iowa should not be taking so much money from Iowans, so they will want to cut taxes.  Other legislators will say that Iowa has not been spending enough on things like Medicaid, so they will want to put the unspent money toward paying direct support professionals more money, ending waiting lists for services, and investing in home and community based options.   That will be the central debate in this legislative sessoin - to cut taxes or invest in services, or a combination of both.

When legislators are in session at the Capitol, this means you can do something. You can ask for change, you can advocate for the things you want to see happen in Iowa. You just have to ask. Your legislators are elected by the people living in their districts, and they work for them.  They work for YOU.  They cannot do their jobs if they don't hear about the things you want to see done.  For example, if you are waiting for services you can ask your State Representative and State Senator to use some of the unspent money to end waiting lists for home and community based services.  infoNET has tools to help you get started - just go to infonetiowa.org! 

There is something good that came out of the COVID-19 pandemic - Iowa's Legislature is now more accessible than ever before.  Before COVID-19, Iowans could only watch debate on bills once they are voted out of committee.  Unless you went to the Capitol, you could not watch or participate in the thousands of subcommittee and committee meetings that are held each session.  That has changed.  

• You can now watch all subcommittees and committees in the House and Senate.  You can see the daily schedule of these here.
• You can participate in subcommittees via Zoom in the Senate, but you have to be in person to talk in a subcommittee in the House.
• You can also watch or listen to the full House and Senate each day here.

Most people do not realize that you can also watch debates that you missed on a bill.  If you click on a bill from our Bill Tracker, just look for "House Video Archives" or "Senate Video Archives" on the left sidebar (see picture below).

Your government is more accessible to you than ever before. You can watch how things work, learn more about the things being talked about, and see how legislators work.  It's not like a class, it's real life and can help you feel more ready to advocate.  So try it out - watch some committees and see how others advocate. 

The Governor and legislators do not always agree, even when they are from the same political party.  In fact, they usually do not.  The Governor must advocate for her issues with the Legislature, just like the Iowa DD Council or other organizations.  She has a lobbyist to help her do that, and the Iowa DD Council has a public policy manager to make sure their priorities are discussed.  Each year, the Governor presents her ideas to the Iowa Legislature in what is called a "Condition of the State" speech.  She hopes that they will act on those recommendations, but it's ultimately up to the legislators to make the final decision.  This year, it is looking like there is more agreement than disagreement between the Governor and Legislature.

Governor Kim Reynolds gave her "Condition of the State" speech on Tuesday, January 11.   You can watch it here.  The Governor had three key asks for the Legislature:

• Cut taxes and allow Iowans to keep more of their hard earned money.
• Get Iowans back to work and find ways to fix Iowa's worker shortage.
• Trust Iowans to make the right choices, what she called "getting government out of the way."

Those issues are in line with what legislative leaders say they want to do as well.  Here are a few things the Governor asked legislators to do:

• Cut income taxes by more than $1.5 billion (average savings to an Iowa family is $1,300).
• End taxes on retirement income.
• Give all childcare workers, teachers, prison staff, and police officers a $1,000 bonus.
• Make childcare more affordable and available to working Iowans.
• Cut unemployment benefits to get people back to work (shortening it by 10 weeks - to 16 weeks of benefits; delaying the start of benefits by a week; and requiring more job applications per week).
• Increase school funding by 2.5% (that's almost $118 million more for public schools).
• Allow students to get private special education services without first getting the approval of the Area Education Agency (AEA).
• Give parents of children on an IEP (individualized education plan) the opportunity to use state funds that would have gone to schools to send their child to a private school.
• Give parents whose family income is less than 400% of the federal poverty level ($106,000 for a family of four) the same opportunity to pay for private school.
• Increase funding for the Office of Public Guardian to clear waiting lists for guardianship servicres to individuals who do not otherwise have someone to take on this responsibility.
• Invest in workforce programs - $3 million more for health care worker tuition programs, $200,000 for two new psychiatric residencies, and a new "Health Careers Registered Apprenticeship Program" that starts kids in high school on a path to a career in healthcare.

The Governor also added $71.2 million to to finish taking over funding for the regional mental health and disability services (MH/DS) system. That’s a total of $121.2 million, and is the amount promised last year when the state stopped using county property taxes to pay for these services.  No funds were added to the regional MH/DS Incentive Fund (but the law doesn’t restart the funding for that until 2025). No regions applied for incentive funds this year because of the extra federal dollars in the system, so regions do not seem to be worried about this right now. The Governor did not make any changes to Medicaid; there is enough federal money coming into the state to keep the state from having to increase state funding this year.  While the Governor did not set out a plan to address Iowa's problem with over-institutionalizing people (that is, not giving people enough options to live in smaller, community-based settings), we have heard that DHS is working on a plan that will require alot of new money. 

WORKFORCE: Many Iowans with disabilities have had their services cut because there are simply no staff to provide them, and that is exactly what the Governor and legislators say they need to fix.  The problem is, they don't know how to fix it, and they may not agree on the solution.  If you want to make sure the solution works for you, talk to your legislators about the types of services you receive, the problems you have when staff are not there, and how that changes your life.  If you cannot go to work because you don't have staff to help you get ready each day, that means another job goes unfilled in the community.  It just makes the worker shortage even worse.

DIRECT SUPPORT STAFF: Giving police officers, child care workers, and teachers $1,000 bonuses sounds like a good idea, but some are asking why the Governor did not include those that provide direct supports to people with disabilities and older Iowans, like direct support professionals, certified nurse aids, and nurses.  That may be a question you ask your legislators, or ask to include them in these bonuses.

HOME & COMMUNITY BASED SERVICES:  The Governor did not include a plan to eliminate home and community based service waiting lists, so if you are someone that is waiting for services and may be on that list for years, now is the time to talk to your legislators. They CAN add money to eliminate waiting lists, even if it was not on the Governor's to-do list.  You might want to talk about what you could do if you had these services.  Could you work?  Go back to school? Enjoy the things your community has to offer?   

COMMUNITY CHOICES: The Governor talked a lot about trusting Iowans to make good choices.  The Governor did not talk about choice when it comes to Iowans who want options for living and working in their community (instead of an institution).  Even though it didn’t come up in the Governor’s speech, there will be a lot of talk about what Iowa can do to address the things that came out in the recent US Department of Justice report that found Iowa in violation of the ADA for not giving people with disabilities a choice to live in the community. You can talk to your legislators about trusting Iowans with disabilities to make good choices for themselves as well.  Iowa needs more HCBS options, and that means funding them.  Right now more than 17,000 Iowans are on HCBS waiver waiting lists; adding the money it takes to end waiting lists is a good place to start.

SCHOOL CHOICES: If you are a parent of a child receiving special education services, the Governor's plan to allow private instruction without AEA approval may give you more choices.  Those choices would become more affordable if you are able to use some of the state education funding for your child's private school tuition.  It may also concern you, as money moves from public schools to private schools, will your school be able to afford high-quality educational services for your child?  You may want to talk about these idea - or raise these questions - with your legislators.

GUARDIANSHIP:  Not all Iowans with disabilities have a family member or friend ho can act as their guardian, conservator, personal representative, or representative payee. That's why Iowa has an Office of the Public Guardian, who can take on this responsibility for the person. Last year, the office served 80 people, but 82 others were on the waiting list for this service. The Governor wants to end this waiting list. 

TAX CUTS: While everyone wants more money in their paychecks, the income tax cut proposed could make it tough for Iowa to fund its Medicaid services and put more money into home and community based service options.  If the state loses $1.5 billion per year, how can the state make the changes needed to do this?  Talk to your legislators about what this will mean and how they will make sure the services Iowans need are not lost.

The 2022 Legislative Session is scheduled to go for 100 days, at least that is how long they have until their travel and staff money runs out.  If they go longer, they will have to do it without staff and will have to use their own money for their meals, hotels, and gas.  Legislative leaders said they are actually trying to get done in 90 days, and that means they will move things quickly.  There are some key dates to remember:

• Friday, January 21 is the last day for legislators to ask for a bill.Don't worry if you missed this deadline, legislators always have ways around this by amending another bill or asking a committee chair to do a "study bill."
  
  
• Friday, February 18 is the first deadline, called the "first funnel."  Lots of bills are dropped into the system, but only about half make it through this funnel deadline.  By this date, bills need to be out of their first committee. Only bills that make it through this funnel are still alive after February 18. There are some exceptions - bills about taxes and budgets (spending) can be debated at any time.  

•  Friday, March 18 is the second (and last) funnel deadline.  By this time, a Senate bill needs to be out of a House committee (and a House bill needs to be out of a Senate committee).  Like the earlier deadline, this does not apply to tax and spending bills. 

• The 100th day of session is April 19. 

If you want to get something done this session - a new law, more money for a program, or changes to a law - you will want to talk to your legislators SOON.  Legislators can only do this during the legislative session, so if they cannot do it now, they'll have to wait until they come back in January 2023.

The Iowa Developmental Disabilities Council wants to make sure 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 and integration and inclusion in all parts of community life.  They say limited disability services and supports could be a thing of the past and a fully accessible Iowa is possible if the state takes the first steps in making Iowa a more inclusive state.  Their 2022 legislative agenda asks legislators to:

• Fully fund healthcare services and community-based supports to address the workforce crisis in both rural and urban areas.
  • Increase the direct care support wage by at least 6% to allow providers to recruit, train and retain quality employees.
  • Financially support evidence-based training for direct support professionals.
  • Allow guardians and family members to be paid to provide support through Iowa’s self-direction options for both children and adults.
  • Support creative workforce solutions (tax cuts for direct support professionals, loan forgiveness programs, recruitment incentives)
    
• Support an inclusive community for all Iowans.
  • Invest in addressing barriers to community living such as family restrooms and accessible sidewalks in all public spaces.
  • Improve access to reliable transportation that allows people with disabilities to live, work, and play in their communities.

• Reduce or eliminate Home and Community-Based Services (HCBS) waiting lists.
  • Invest in community-based services and eliminate Iowa’s institutional bias revealed in the recent US Department of Justice report.
  • Simplify the current waiver system to increase the ability to serve the varied needs of Iowans.
  • Hold managed care organizations accountable to provide creative and specialized services that encourage community integration.

Brooke Lovelace, Executive Director for the DD Council, asks legislators to create change for all Iowans with disabilities. “Thousands of Iowans adapt to life while having a disability every day. Our rural and urban communities should not compound these hurdles by being inaccessible. We must do better. Iowa must invest in its workforce, in its communities, and in its services so that all Iowans can live their most productive and independent lives possible.”  

You can watch the 30-minute Iowa DD Council Open House (NEED TO ADD LINK), where Iowans with disabilities share their stories to demonstrate the need for each of the Council's three priorities.  It's also a really good way to see how others tell their stories to legislators!

There is a workforce crisis is rural and urban areas of Iowa that can be alleviated. A 6% increase in direct care support wages along with incentives like free training, tax cuts, or loan consolidation will encourage more quality health care providers to work in Iowa. This gives people like Tucker in Waterloo hope that one day he won’t have to worry if he will have a caregiver’s help each morning.

Rob, a husband and father in NW Iowa, looks forward to when life is no longer limited by inaccessible public spaces. Like all people, Rob wants to attend his kids’ activities without having to worry about who will assist him if he needs to use the restroom. Investments in community living such as family restrooms, accessible sidewalks, and reliable transportation allow people like Rob to easily manage everyday experiences many people take for granted. 

In Clear Lake, Rylee has been on a waiting list for essential services for two years and expects to wait at least two more. This is in stark contrast to our neighbors in Minnesota where there are no waiting lists. By investing in services, simplifying the current waiver system, and holding managed care organizations accountable to provide services that encourage community integration, more Iowans will live the independent lives that they deserve 

A United States Department of Justice (DOJ) report says Iowa is in violation of the Americans with Disabilities Act, which gives people with disabilities the right to be served in the most integrated setting possible. The most integrated setting is one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible.”

The report says Iowa violates the civil rights of Iowans with intellectual and developmental disabilities by placing them in public and private institutions at much higher rates than other states.  The report found:

• Too many people with intellectual and developmental disabilities are served in State Resource Centers (Woodward, Glenwood), nursing homes and other large settings, what many call “institutions” – instead of in the community.
  
  
• The number of Iowans with disabilities who are living in an institution has stayed the same since 1982, even though the number nationally has been cut in half. 

• Iowa is one of the top four states for placement of persons with intellectual and developmental disabilities in nursing homes and is in the top five states for placement in intermediate care facilities (ICFs).
  
  
• Many Iowans living in these institutions are not given the choice to live in the community.
  
  
• Iowa has failed to develop the home and community-based services and supports that are needed to give Iowans with disabilities that choice.

Remember the 1999 Olmstead Decision?  In this decision, the US Supreme Court said that states were required to provide community-based services to people with disabilities when the services are appropriate, and the person wants to be served in the community.  Despite the decades of hard work by Iowa’s Olmstead Task Force, the state has not spent the money needed to build a solid, statewide community-based system of supports for Iowans with intellectual and developmental disabilities.  That is the work that is ahead for the state. 

This report is a wakeup call for Iowa, the home state of the ADA’s lead sponsor Tom Harkin.  Iowa must now start to develop community supports that equal the specialty services offered in institutions.  This is not just a DHS issue – this report will require a major cultural shift in our state and local governments, and require a significant investment from the Legislature in order to make this happen.   

Here are a few things the DOJ has told the state to do:

• Increase community capacity by expanding services and removing restrictions on community services for people living in or at serious risk of entering an institution.
• Remove barriers to accessing community services.
• Make sure people with disabilities and their guardians know their options.
• Help people successfully transition to community living. 
• Build up the quality of care in institutions for those wishing to remain there.
• Give all institutional residents an individualized, person-centered service and transition plan that identifies the services and supports needed to be served in the community.
• Make sure Managed Care Organizations, Mental Health/Disability Services Regions, and community providers work together with other partners to avoid unnecessary institutionalization.

For more information:

• Press Release
• Full Report
• Iowa DD Council Statement on DOJ Findings

This is about choice.  You should have the choice of how you want to be supported.

Iowans with disabilities are not being given a choice to be served in their community, so now the Legislature must take action to make sure we build a system that supports these choices.

Some people do not even have the information to know there is a choice.

Iowa is serving too many people with disabilities in institutions because there are not enough options to live in the community.

When you are served in the community, you get to make your own choices. When you are served in an institution, other people make choices for you.

This is not just a DHS issue; all of Iowa needs to work to make our communities more accessible.

Change cannot happen without funding to build up the system – public transportation, community providers, and trained workers.

Iowans with disabilities have been able to open an ABLE account since January 2017, but still few are taking advantage of this incredible savings tool.  ABLE Accounts (which stand for "Achieving a Better Life Experience") allow a person with a disability to save money for future health and living expenses that are not covered by other federal or state assistance.

We have heard that some people are being told they cannot work more hours, or they will "make too much money" and lose the benefits that help them be able to work.  If you are worried about that, consider an ABLE Savings Plan or show your guardians this information. You can also watch this great webinar on keeping benefits while saving with ABLE.

You can also watch the Iowa DD Council's webinar on earning more, but not losing benefits below.

Legislators spend Monday-Thursday in Des Moines during session, but they go back to their home districts for the weekend.  Many have town hall meetings where they connect with the people they represent. This is a great way to meet your legislator, and if you are comfortable, talk about some of the things you'd like them to do during the session.  Remember, session is the time when your legislators can do something about your issues!  You can find a complete list of these local town halls here.

The Iowa Department of Human Services (DHS) is also hosting monthly virtual (Zoom) town halls to hear from Medicaid members.  They are the fourth Thursday of each month - the next one is January 27 at 5:00 p.m.  You can sign up here.  You can also watch earlier zoom meetings and read the notes from each meeting there.

DHS is also planning several listening posts to hear from Medicaid members on specific subjects.  

• Tuesday, January 18 (4-5 pm) - Managed Care RFP Stakeholder Input - register here

• Thursday, January 20 (3-4:30 pm) - Long Term Services and Supports (LTSS) Community Based Case Management (CBCM) - register here

• Wednesday, February 9 (3-4:30 pm) - Maternal Health - register here

• Tuesday, February 15 (3-4:30 pm) - Transition Aging Services - register here

• Tuesday, February 22 (3-4:30 pm) - Natural Supports - register her

Medicaid members who need assistance with registration for the DHS meetings, may contact IME Member Services at 1-800-338-8366.  You can also send written comments or suggestions to IMETownHall@dhs.state.ia.us.  These are virtual meetings, but there is a call-in option available for those unable to stream live video. The meeting will be held using Zoom; login information will be sent to registered attendees the week of the meeting. 

It's only the first week and already we have a bunch of bills that were added to our Bill Tracker.   Our Bill Tracker is updated twice a day and we've changed the look to make it easier to get the information you need to take action. Check it out!

Here are a few bills that may be of interest to you:

• House Study Bill 512 changes the definition of "autism disorder" in law from a medical diagnosis to a mental health one.  By doing this, insurance companies would violate mental health parity law for not covering and treating it equally. It is also in line with the diagnostic manuals used by mental health professionals.  The bill is a priority of Autism Speaks. The key legislators working on this bill are Rep. Shannon Lundgren, Rep. Joel Fry, and Rep. John Forbes.

• Senate File 2035 allows local government dog breed bans to apply to therapy animals.  For instance, Iowa law allows a person to take their therapy animal to any public space.  If this law passes, therapy animals that are a banned breed in the community would not be able to be in public spaces. Some cities and counties have banned some types of dogs, usually pit bulls.  Under the Americans with Disabilities Act (ADA), there are no breed restrictions. The bill has been sent to the Senate Local Government Committee, but has not yet been assigned a three-person subcommittee (check the bill tracker for updates).

• Two bills have been introduced to help get more Iowans into mental health careers.  Both bills forgive college loans for mental health professionals that serve in one of the state's mental health shortage areas (the entire state is a shortage area except Polk/Dallas/Warren, Pottawattamie/Mills, Linn/Johnson, and Scott counties).  The two bills are nearly identical, except House Study Bill 537 is for prescribing mental health professionals (psychiatrists, psychiatric nurse practitioners, prescribing psychologists) and Senate Study Bill 3003 is for non-prescribing professionals, like social workers, mental health counselors, marriage and family therapists, and psychologists.

• Several bills were introduced in the House this week to address the perceived fraud or abuse of public assistance benefits.  Iowa has a very low rate of abuse, much lower than the national average, so groups worry that these bills could place enough barriers in place that people will not get the help they need and qualify for.   These bills - House Study Bill 502, 503, 504, 507, 515 - take different approaches that require more paperwork and more work for Iowans receiving Medicaid benefits, food assistance (SNAP), and family support (FIP). The Senate passed a similar bill last year (Senate File 389) but the House did not take action on it.  You might want to read these to see if the additional work would impact your life, and potentially cause you to lose services.  We'll talk more about these bills in later reports, as subcommittees on these bills have already started.

• It wouldn't be a legislative session without a bunch of COVID-19 vaccination bills.  Legislators already passed a bill that requires businesses who require their workers to get the COVID-19 vaccine to allow for a religous exemption and allow those who lost their jobs for failing to be vaccinated to get unemployment benefits. Now there are several new bills (with the promise that more are coming): House File 2036 requires employers that require employee COVID testing as an alternative to vaccination to pay for the testing and time away from work; Senate File 2030 requires a business or organization that requires proof of COVID vaccination to also accept proof of COVID natural immunity as an alternative; and Senate Study Bill 3004 states that only the State Board of Health can require additional immunizations for childcare centers and schools (so schools and childcare providers could not do it on their own).