infoNET Spring 2022

For many years advocates have told their stories and hoped it would help their legislative officials make better laws.  This year advocates have been telling their stories, and people are listening.  President Joe Biden has asked for a big investment in home and community based services, and back home our state legislators are trying to do the same. In this issue of infoNET, we want to turn our focus to Washington DC, with a bit more about what's going on here in Iowa.  

The Iowa Legislative Session is nearly over; it may very well be done by the time you get the print version of this newsletter.  That's why we want to spend more time talking about what Iowa's congressional representatives, the US Representatives and US Senators that work in Washington DC on behalf of Iowans, can do to make home and community based services more available to Iowans with disabilities.  

It's also a good time to note that if you want more up-to-date news, please sign up for the Iowa DD Council's infoNET email reports.  We now have a short weekly "This Week at the Capitol" report that comes out every Monday during the legislative session,a short weekly "Capitol Snapshot" video that covers the biggest issues of the week, and the longer mailed (four times/year) newsletter like this one.  Please email or call us if you want to be added to our email list: 800.452.1936 or infonetiowa@gmail.com.

You read the title right.  The Iowa House of Representatives is ready to take action on a budget that includes more than $25 million in new money to help give more Iowans with disabilities access to home and community based services. This has been a top issue for the Iowa Developmental Disabilities Council, but it is far from a done deal.  

The House Appropriations Committee has passed out all ten budget bills, but the Iowa Senate has yet to introduce one.  So there is not agreement on these budgets, but there is definitely something to get excited about.  Rep. Joel Fry (R-Osceola), the chair of the Health and Human Services (HHS) Budget Subcommittee, said the budget reflects what he has heard from Iowans: pay the people who provide direct services to Iowans with disabilities better and expand access to mental health services. He also said the bill begins to build up community capacity to give Iowans with disabilities more community living options.  

The Health and Human Services Budget (House File 2578) includes:

• Full funding for Glenwood and Woodward State Resource Centers to make sure those living there are safe and know their options.

• $14.6 million increase in Home and Community Based Service (HCBS) provider rates to increase pay going to direct support staff and the supervisors that covered shifts during the pandemic.  This is expected to raise hourly wages by $3/hour, and includes individuals on the Consumer Choice Option and habilitation providers.  

• $7.4 million more to remove 250 people from HCBS Intellectual Disabilities (ID) waiver waiting list (there are currently over 5,700 people on this waiting list).

• $4 million increase to expand rural access to home health care providers (so people in rural areas have the same access as those in urban areas, particularly as gas prices are on the rise).

• $3 million increase for Intermediate Care Facilities to increase direct support staff wages for those who support individuals with intellectual disabilities.

• $2 million more to raise psychiatric hospitalization rates for more complex patients (also called "tiered rates"), so providers are paid more for people that require lower staffing ratios or need more services.

• $3 million more for child psychiatric hospitalization rates; this is a 36% increase to help make sure these services remain available and encourage more access.

• $1.1 million more to increase residential substance use rates.

• $71 million of new money for full take-over of mental health and disability services (MH/DS) regional funding.

• 500,000 to clear waiting lists for guardianship services through the Office of Public Guardian.

• $300,000 to hire three more long-term care ombudsmen.

It should be noted that all Medicaid funds noted above can be matched - every $1 the state puts into Medicaid is matched by about $2 of federal money! So that $25 million in funding to reduce waivers, increase salaries, and improve access is actually closer to $75 million!  The federal match right now is high because it was increased during the pandemic.  You can see what that percentage is regularly, and right now during the pandemic, for each state here.

The House Education Budget (HF 2575) also has some great surprises. The House has already passed this bill on to the Senate, but no action has been taken by Senators as of April 4, 2022.  Some of the things in this include: 

• $200,000 in new funds for scholarships for post-high-school transition programs at Iowa colleges for young Iowans with intellectual, cognitive, and learning disabilities, if the bill creating this program passes (HF 2495). There are currently two programs in the state - REACH at University of Iowa, and NEXT at Northwestern College.  REACH (Realizing Educational And Career Hopes) are two- and four-year programs that give young adults an integrated college experience within a caring and supportive environment.

• $4.5 million more for college loan repayments for health care professionals, including $1.5 million for new program for mental health professionals, if the bill creating the program passes (HF 2549). This new loan repayment program will repay college student loans for social workers, marriage and family therapists, mental health counselors, psychologists, prescribing psychologists, psychiatric Advanced Registered Nurse Practitioners, physician assistants working under the supervision of a psychiatrist, and psychiatrists in areas where access to mental health services is lacking.

• $120,000 increase for vocational rehabilitation services.  Vocational rehabilitation services  provides expert, individualized services to Iowans with disabilities to achieve their independence through successful employment and economic support. These state funds can be matched by federal dollars, adding even more money to their employment efforts.

• $200,000 increase for school-based mental health at the Area Education Agencies (AEAs).

• $10,000 increase for Best Buddies to expand into more schools, for a total of $35,000.

• The State House has put more money into their budget for services and supports.
• More money means more pay for staff, and hopefully they stay longer.
• More money also helps providers offer more types of services.
• Taking people off waiting lists lets more people get the services they need.
• The Senate may make changes to this budget.
• To pass, the Senate and House will have to agree on how to spend the money. 

Last October, President Joe Biden announced his Build Back Better (BBB) Act, a far-reaching, $2.2 trillion (yes, that’s trillion) plan that invests in a number of areas, including education, labor, child care, health care, immigration, and the environment.  As first proposed, the BBB Act included several things that would help persons with disabilities:

• $150 billion for Medicaid Home and Community Based Services (HCBS) to allow more people with disabilities to get care in their home or community rather than in institutional settings. 

• $450 million more per year to the Money Follows the Person (MFP) Program to help states support more options for community living.

• $1 billion to support direct care workers, who provide essential supports to people with disabilities in their homes and communities. Funds would support better wages and benefits for direct care workers, as well as grants to states for training and education opportunities.

• Permanently extend Medicaid protections against spousal impoverishment for HCBS. This protection allows one person in a married couple to receive HCBS services without their spouse having to become less financial stable to support them.

• Support more meaningful job opportunities with fair pay for people with disabilities by investing $270 million for state grants for competitive integrated employment options that support people with disabilities in the workforce.

Although the US House of Representatives passed the BBB Act in November, the Act failed to make it past the Senate. President Biden is now putting together a new BBB plan (what we're calling for now Build Back Better 2.0) and we want to make sure the pieces that benefit persons with disabilities are included in these future plans.  This type of investment, along with what you are reading about above on the state level, are game changers for Iowans with disabilities.  

 

• Home and Community Based Services (HBCS): Right now more than 17,000 Iowans with disabilities are on the HCBS waiting list. Iowa needs more HCBS options and the BBB Act would provide funding to do just that by reducing HCBS waiting lists and allowing more people with disabilities to live and work near family and friends.
  
  
• Direct Care Workers: Direct support professionals provide support for people with disabilities in their homes and communities. These workers deserve a competitive wage, benefits, and support to do their jobs well. The BBB Act would support fairer pay and better benefits for these essential workers.

• Protect Spouses: Currently, Medicaid allows one person in a married couple to receive HCBS services without their spouse having to become less financially stable to support them. But this is only a temporary rule. The BBB Act would make this protection for spouses permanent.

The Iowa Legislature decides how to spend your state tax dollars.  The US Congress decides how to spend your federal tax dollars.  Both the Iowa Legislature and the US Congress are thinking about giving big increases to support people with disabilities in the community, provide more opportunities for employment, and pay those that provide this support better.  That's really exciting news, but it will take advocacy for this to actually happen.  

Imagine if you send both your state legislators and your federal representatives a message of support - and they both increase funding!  We can do this - but we need people take action.

For US Senators & US Representatives:

• The President has asked for more money in his Build Back Better Act for HCBS services and supports.
• More money means more pay for staff, and hopefully they stay longer.
• More money also helps providers offer more types of services.
• Taking people off waiting lists lets more people get the services they need.
• Whatever new plan takes the place of the Build Back Better Act, make sure it includes these important increases to support community living.

For State Representatives & Senators:

• The State House budget includes more than $25 million to help support people with disabilities in their homes and communities, rather than institutions.
• More money means more pay for staff, and hopefully they stay longer.
• More money also helps providers offer more types of services.
• Taking people off waiting lists lets more people get the services they need.
• Ask your state Senators to support the House budget and give people more options to live and work in their homes and communities.

Earlier this year, the US Department of Justice (DOJ) told Iowa it was violating the rights of people with disabilities by giving them too few options to live in the community. Instead, the DOJ said Iowa was over-institutionalizing people.  They wrote a report telling the state about these problems, and now the state must work with them to develop a plan on how to address these issues.  That plan probably won't be ready until this summer or fall, but we the new Iowa Department of Health and Human Services to give you an update.  

Iowa DHS Update on DOJ Investigation into State Resource Centers From Director Kelly Garcia

The U.S. Department of Justice (DOJ) released a report on their investigation into the Glenwood and Woodward resource centers in December 2021. The report found that Iowa relied heavily on institutionalization because the state lacks a full array of services to care for people with intellectual and developmental disabilities (IDD) in their home communities. 

The investigation began in late 2019 and focused on two main areas; facility needs to adequately care for institutionalized residents, and community supports to care for individuals in the community.

The report’s findings were significant, but not surprising. Department of Human Services (DHS) leadership has worked closely with the DOJ over the last two years to correct deficiencies and work out solutions to problems identified during the investigation. The department has also kept an open dialogue with residents, guardians, advocates, and policymakers to keep them informed. DHS leadership also held discussions with legislators to discuss how the state will finance improvements to the resource centers to address the DOJ’s findings.

The Governor’s FY2023 budget recommendation includes funding to address facility needs related to the first part of the investigation. DHS is in ongoing negotiations with DOJ and is close to having a finalized consent decree addressing facility improvements.

The budget includes an increase in general funds for both state resource centers and the flexibility to use carry forward funds. The Governor’s budget recommendation included a general fund increase for Glenwood Resource Center in the amount of $1,485,866 and for Woodward Resource Center in the amount of $1,171,357 and takes advantage of the enhanced Federal Medical Assistance Percentage (FMAP) due to the ongoing federal public health emergency (PHE).

DHS anticipates sufficient funds to cover the portion of the work we can complete in one fiscal year, acknowledging that additional, ongoing investment in our facilities will need to occur.

Beginning in 2020, DHS began holding focused discussions with residents and guardians about the best setting in which to provide care for residents of our state resource centers. If a resident can receive quality care in their own community rather than in an institutional setting, that should be a goal for that resident. However, many parts of Iowa lack these community supports, so the state has over relied on institutionalization.    

Although we do not yet have a draft consent decree from DOJ on the second part of the investigation, we know it will require a large investment in community integration.

Director Garcia continues to discuss the importance of ensuring a broad continuum of supports for Iowans with intellectual and developmental disabilities. To move forward in this space, we must balance resource investment, building high-caliber services at the state resource centers that can support community living, while targeting investment in community capacity. This investment must start with bolstering the workforce and build from there to stabilize and significantly increase community capacity to lessen Iowa’s reliance on institutionalization.

The DOJ investigation will require Iowa to invest in our facilities, while also making a significant and ongoing investment in the community. These funding needs, and discussions around them, will continue for years to come. DHS is proud of the work we’ve already done and committed to continued progress. We are also thankful for our tremendous team at the resource centers who have dedicated their lives to serving Iowans with disabilities and who have remained flexible and up to the challenge of constant shifting over the last year. We are equally thankful for our team of social workers, Medicaid team members and other team members who work to support community placement and ensure strong oversight.

And, finally, to the guardians, loved ones, and self-advocates who have helped us shape this north star vision of what Iowa can be – we couldn’t do this work without you. There is more to come and we remain deeply grateful for the feedback, constructive criticism and partnership. Our work is better because of you!

•  The full DOJ report can be viewed here: https://www.justice.gov/opa/press-release/file/1454256/download

• You can view all of DHS’ public documents on the DOJ investigation of the state resource centers at: https://dhs.iowa.gov/doj 

• Iowa has too many people living in institutions.
• Iowa needs to give people more choices: where they want to live, where they want to work, who they want to support them.
• To give Iowans a choice, the state needs to put money and support into community providers.
• The state will need to make big changes to serve people better, so now is your chance to help create the system you want! 
• Stay tuned for learn how you can help (but the Action Alerts above are a great start!)

The Iowa Developmental Disabilities Council was in Washington D.C. at the end of March.  Brooke Lovelace, Executive Director, and Bill Kallestad, Public Policy Manager, had an opportunity to attend the recent Disability Policy Seminar in Washington D.C. 

The seminar provided an opportunity to learn from other disability advocates about key national legislation and top priorities. They took this opportunity to meet with and share the DD Council's 2022 Legislative Agenda. It was a great chance to discuss the important work of the Council with the Offices of Senators Grassley and Ernst, and Representatives Axne and Feenstra.

Our national legislators are very aware of our concerns about the workforce crisis, accessibility issues, and the growing Home and Community Based Services (HCBS) waiting lists.

We thank them for their time and efforts on behalf of Iowans with disabilities.

The Iowa Department of Human Services and Iowa Department of Public Health have spent the last year making a plan to combine the two departments into a single agency. In March, they released their plan.  Their goal is to make it easy to access the information, staff, and resources you need without trying to navigate through the system.  They call it a "no wrong door" approach, and they want to make it easy to get what you need.  You will be hearing a lot more about this over the next year, because this big of a change doesn't happen overnight.

• You can read the plan here.

• You can see the new agency chart here.

• It will be easier for people to get services and find answers.

• The department can have better information to help them make good decisions.

• Staff will be able to connect people to services seamlessly - without getting lost in "the system."

• Staff will share a vision for the system, they will all be working toward the "big picture."

Make sure you RSVP for our next monthly Capitol Chat on Friday, April 29 at 11 a.m.  This should be a full hour, as we go through all that happened in the 2022 legislative session.  The session is set to adjourn on April 19, but they could go longer.  We're just going to knock on wood and hope they are gone by the time we meet!  ASL interpreters will be on the zoom.

• Click here to RSVP for this zoom session (you can also join by phone).  
• Click here to watch past Capitol Chats and our new weekly Capitol Snapshots (a quick look each week at what's happening at the Capitol).

Many of you still receive infoNET by mail only.  infoNET is now mailed four times a year, but we also send out a short weekly email to keep advocates informed during the legislative session.  If you receive infoNET by mail only, you are missing out on these weekly reports, the weekly video Snapshots, and then the summer/fall alerts that come between these printed issues.  If you would like to also get infoNET by email, let us know by calling 1-800-452-1936 or emailing us at infonetiowa@gmail.com.

The Iowa Department of Human Services has announced it will give home and community based providers and individual consumer-directed attendant care (CDAC) providers and individuals another opportunity to apply for grants to give bonuses to staff who continued to work through the COVID-19 pandemic.  Requests for these grants must be received by April 22, 2022. Click here for more information.

The Iowa Legislative Session will end sometime this month.  They stop getting their expense checks and no longer have staff to help after April 19, but they could go longer than that.  It is going to be tough to get all the work they need to do before that.  We did not want to list the status of bills we're watching here, because the session could be done before this hits your mailbox.  You can find the most current status of bills in our online Bill Tracker: www.infonetiowa.org/bill-tracker.  

As of April 4, 2022, the following bills are still alive:

Do not forget to check the infoNET calendar for the most updated list of town halls, special events, meetings, and more.  There are currently more than 30 events still planned for April. You can find it here.