2014 INFONET #2

It seems like the Iowa Legislature just started it's work, but with the shortened 90-day schedule, legislators are now one-third of the way through the session.  The fast pace of the past two weeks certainly seems to show legislative leaders mean business and want to wrap things up by the end of March or early in April. April 4 is their goal for getting done this year.
 
To be done, legislators will need to get an early start on budgets, which they typically do not start putting together until mid-March.  However, this year budget negotiations are already happening at both the leadership and committee levels.  Budget subcommittee chairs are working together and with their leaders to put together their budgets.  The Transportation Budget (SF 2130) is the first out of the gate, having passed the Senate Appropriations Committee and ready for floor debate ("floor debate" is when all Senators discuss and vote on a bill).

WHAT DOES THIS MEAN FOR ADVOCATES?  If you care about funding for a project, program, or service, now is the time to start talking to your legislators about it.  Even if your legislator is not on the right committee, you can always ask them to talk to other legislators they know that do serve on the committee making decisions.  Don't wait until March to talk about funding, or it may be too late.  You can email your legislator (click here to use our Action Center to find and email your legislator), or go to a local forum and talk to them in person (click here for list).

While budgets are being developed, most legislators are working hard on a more immediate deadline.  The first "funnel" is just two weeks away on Friday, February 21.  This is the first cut-off date for bills.  By that date, any bill not dealing with taxes or spending will have to be voted out of committee to stay alive for the session. So the typical day at the Capitol these days means 15-25 full committee meetings and 40-60 subcommittee meetings. While all meetings are open to the public, you will have to check the calendars regularly to know when and where things will be, as new meetings are added every hour. 

WHAT DOES THIS MEAN FOR ADVOCATES?  There are now 544 bills that have been introduced this session, not counting all the bills held over from last year. Some of these bills are one page long, and some are nearly one hundred pages long.  It is very hard for your legislators to keep on top of all the bills out there, and which ones are important to the people they represent.  If you see a bill that you think is good (or bad) - let your legislator know! You can check out some of the bills introduced in our Bill Tracker, or go online and look through the entire bill list.

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The Health and Human Services Budget Subcommittee met last week to talk about how the redesign of the mental health and disability services system was going.  County officials and state employees agreed that they are making positive progress as regions have now formed and are working on their agreements so they will be ready to go on July 1, 2014, when all regions need to begin working together to provide services.  Legislators were told as many as 11 counties continue to have financial difficulties in the transition to regions, but only a few will have longer term issues that may or may not be resolved once regions begin sharing their resources.

While the meeting started on a positive note, cracks in the system quickly started to show as legislators began asking questions about ongoing funding and an overall plan to move forward.  County representatives continued to express concern that there is no plan for continued funding of the system beyond next year, and laws in place now would require county funds to be returned to the taxpayers or the state if they see any savings because more people will now have health insurance.

Sen. Joe Bolkcom (Iowa City) and Rep. Lisa Heddens (Ames) were the most vocal with their concerns, and said the Legislature needs to do something this year to make sure redesign is funded and that the people that use the services know those services will be there in another year. There are a few things legislators say they will need to do in a bill this year:

• Decide on permanent funding for regions.  The $29.8 million Equalization Fund is only in Iowa law until June 30, 2015.  So it will end after this next year unless legislators do something this session.  Some legislators want to make this permanent, so all counties are "equalized" and allowed to spend $47.28 per person living in their county.  While services are delivered and funded by regions, each county collects the money separately through property taxes and the state equalization fund.  Other legislators want to look for ways to make sure every county has enough money to provide services, and they think that the equalization formula still leaves some counties in financial trouble.
  
  
• Decide how much money is really needed in the system.  Legislators said that regions need time to find out which core services they are able to fund, the number of people with intellectual disabilities and mental illness ("targeted populations") that will need those services, the number of people with developmental disabilities and brain injuries (not "targeted populations") that need services, costs to add core plus services, and gaps in the system that need to be filled.  Once regions are operational and can collect this information, legislators will know more about how much is needed.  For that reason, many legislators want to "freeze" the system where it is for a year or two and address future funding needs after more information is available.
  
  
• Make a decision on the "clawback" that requires counties to repay any savings.  When legislators passed redesign funding last year, they included a requirement that counties track how much money they will save once people they were previously serving got health insurance through the Affordable Care Act or Iowa Health and Wellness Plan. Counties are tol track this savings this year, and will have to repay 80% of those savings next year.  That repayment either goes to the state (if they receive equalization payments) or back to their taxpayers in the form of property tax cuts. Counties say they have no idea how they are supposed to be tracking these savings, that DHS has not yet released a methodology for this, that they are already two months into the six-month tracking period, and that this repayment (called a "clawback") could potentially collapse the system.  Counties and some legislators are asking for this "clawback" to be eliminated; other legislators say they want to delay the "clawback" for two or three years until they have more information on services provided and people served; and some legislators (and the Governor) want the clawback to remain in place as is.

 The Mental Health & Disability Services Interim Committee met this summer, and made 26 recommendations (you can view the report here), including a one-year delay of the clawback. These recommendations include:

• Passing the $29.8 million equalization funding early in session so counties and regions know the funding will be there at the beginning of the fiscal year on July 1, 2014.  The $29.8 million was included in the Governor's budget.
  
  
• Change funding formula so that the $47.28 equalization formula is calculated on a regional basis, rather than county-by-county.
  
  
• Delay the repayment ("clawback") requirement by one year and slowly phase in the repayment over several years.  So the 80% repayment wouldn't happen at once (no repayment in year one, then 10% in year two, 20% in year three..or some other type of phased in approach).
  
  
• Look for ways to fund supported work and other work opportunities, as well as adding enough money to the prevocational and vocational rehabilitation budgets to draw down all federal dollars available.
  
  
• Expand definition of core services to include core plus services, and make sure persons with brain injury or a developmental disability have access to regional services.
  

Senator Amanda Ragan (Mason City) is having a bill drafted to implement these recommendations. The bill will probably be an "Appropriations Bill" because it involves spending and tax issues, so it will not be subject to the funnel deadlines we talk about in the article above.  That means the bill can be discussed at any time during the legislative session.

Want to know which legislators supported these recommendations?  Click here to see the members of the interim committee that approved these recommendations.

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Sometimes legislators pass bills that they think are good, but turn out to be a problem when they become law.  That's the case with legislation passed last year that directed the Department of Human Services (DHS) to require providers of personal care under the Consumer-Directed Attendant Care (CDAC) option to be associated with an agency. 

Last year, the Health and Human Services Budget Bill (Senate File 446) directed DHS to implement certain cost savings measures.  The bill stated:

The department shall require transition of the provision by individual providers of personal care under the consumer directed attendant care option to agency-provided personal care services and shall retain the Consumer Choices Option for those individuals able and desiring to self-direct services. 

To implement this legislation, DHS submitted rules for consideration by the Administrative Rules Review Committee, which is made up of ten legislators.  Hundreds of Iowans sent comments on these bills, including providers of the service and people receiving the service.  There was a lot of confusion in this process, because many people thought they would have no other option to self-direct care if they were forced to go through an agency to select a person to provide care.  In addition, the rules prohibited someone from being both a provider of care and a guardian in charge of making decisions for the person.  In many cases, a parent or loved one performs both roles, and this was cause for concern among many individuals.

Because of issues and concerns brought forward, DHS decided to stop the rules and instead work on a plan that would allow for a long-term transition that would allow current individual CDAC providers to continue to provide services to the members they are currently serving.  Two legislators have decided to step in to address the issue legislatively - Senator Mark Chelgren (a Republican from Ottumwa) and Senator Tom Courtney (a Democrat from Burlington).

• Senate File 2065 by Senator Chelgren eliminates the requirement passed by the Legislature last year, returning everything to the way it is now (individuals can act as CDAC providers and individuals do not have to go through an agency to find a person to provide the services).  The bill also clarifies that a person can be both CDAC provider and legal guardian.
  
  
• Senate File 2066 by Senator Courtney allows a provider of self-directed care services (whether under CDAC or the Consumer Choices Option) to be both provider and legal guardian to the people they serve.  This is both for people currently being served, as well as others that will get these services in the future. In addition, the bill allows anyone currently providing services under CDAC to continue to be able to do so without being aligned with an agency. So the bill "grandfathers in" those currently directing their services with an individual (non-agency) provider.  The bill clarifies that moving forward, people have a choice in self-directed care: 1) they can go through an agency to receive Consumer Directed Attendant Care (CDAC) services, or 2) they can continue to direct their care on their own through the Consumer Choices Option (CCO).  Senator Courtney's plan is very similar to the plan DHS is working on now.

The subcommittee assigned to the bills (Sen. Pam Jochum, Sen. Bill Dotzler, and Sen. Jack Whitver) met to discuss both bills, with about 20 individuals in attendance.  The group will meet again this week to decide what to do, although they have indicated they plan to work from Sen. Courtney's bill.  There were concerns about the dual role of some individuals as as both providers and guardians, and they plan to talk about things that could be done to protect individuals who might encounter providers that are not acting in their best interest.  

Some Background on the Consumer Choices Option: The rules issued last summer did not do anything to the Consumer Choice Option, which is a personal care service that states can offer under the Medicaid State Plan.  The rules that were terminated also dealt with personal care services, but were specific to the HCBS Waivers.  Under the Waiver programs, personal care is provided through the Consumer Directed Attendant Care (CDAC) service.  CDAC can be provided by both agencies and individual providers.  The rules would essentially eliminate CDAC as a waiver service and give members currently receiving CDAC a choice for transitioning to another personal care service in place of CDAC to receive personal care services (not consumer-directed) through an agency provider or continue to self-direct services through the CCO program, which does allow individual or agency providers.

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Bullying of children with disabilities is significant but there is very little research to document it.  According to the Parent Advocacy Coalition for Educational Rights, only 10 U.S. studies have been conducted on the connection between bullying and developmental disabilities but all of these studies found that children with disabilities were two to three times more likely to be bullied than their nondisabled peers. One study shows that 60% of students with disabilities report being bullied regularly compared with 25% of all students. (For more information go to www.pacer.org or click here for anti-bullying resources).

Last year, Governor Terry Branstad called educational leaders, parents, and students together at a summit to come up with a strategy to eliminate and confront bullying in our schools.  He has introduced anti-bullying legislation (HSB 525) and legislators have introduced several others (SSB 3149 by Sen. Quirmbach; SF 2016, SF 2061 and SF 2062 by Sen. Johnson).  All of these bills take different approaches - some require parents be notified and others require schools to act even if the bullying happens on social media or off school grounds.  

If this is an issue you care about, do not worry about what each bill does.  Talk to your legislator about your experiences or your child's experiences.  Telling your story will help your legislator know why this is an important issue to you, who s/he represents.  If you have ideas for them on how schools and communities can address this, let them know! 

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Check out disability-related bills that have been introduced so far this year - click here to go to our Bill Tracker.

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