INDIANA MEDICAID WAIVERS What You Need To Know

BY DR. DAROLYN “LYN” JONES WITH SALLY MORRIS, THE ARC OF INDIANA DIRECTOR OF COMMUNICATIONS

Many Hoosier families have been left confused by the many recent changes to Indiana’s Medicaid Waiver program. Other Hoosier families don’t know what the Indiana Medicaid Waiver program is or how to apply for those waivers. And sadly, there are too many Hoosier families who have applied for a waiver but are still on long waiting lists.

IN THIS ARTICLE, WE:

1. describe each of Indiana’s Medicaid Waivers, including recent major changes to the names, populations served, and administering agencies of some of the waiver programs; 2. provide some historical context on the origin of the Medicaid Waiver and its implementation in Indiana; 3. highlight the supports each waiver now provides to individuals with disabilities and their families; and 4. summarize how a major state budget shortfall and discontinuation of Covid-era protections has impacted implementation of the waiver changes and resulted in ongoing hardship for thousands of Hoosiers with disabilities and their families.

WHAT IS A MEDICAID WAIVER, AND WHAT IS THE HISTORY OF THE MEDICAID WAIVER PROGRAM?

The Medicaid Waiver allows Medicaid to fund supports and services for children and adults with disabilities in their homes or communities instead of institutions.

As Marci Wheeler, a former social work specialist with th Indiana Institute on Disability and Community (IIDC) at Indiana University, wrote: “In the past, Medicaid only paid for long-term care services in an institutional setting, such as nursing facilities and group homes. The waiver program “waives” the necessity of admission into an institution in order for Medicaid to pay for needed home and communitybased services. Medicaid Waivers make Medicaid funds available as an alternative to institutional care if supporting the individual, in the home and/or a community setting is no more than the cost of care within an institutional setting.”

In 1981, then-President Ronald Reagan learned about the plight of Katie Beckett, a three-year-old ventilator-dependent child who could only receive Medicaid covered care in a hospital. He authorized the waiver of eligibility rules to allow Medicaid to cover services in her home. The story spurred national awareness and action, and by 1983, Congress had added section 1915(c) to the Social Security Act, giving states the option to create Medicaid Waiver and make home and community based services (HCBS) possible for many who were then in institutional care.

Prior to the closure of Indiana’s state institutions, nearly 46,000 children and adults were institutionalized in these facilities. When the last one closed in 2007, the cost per year to house one individual was an astonishing $233,600.

The state began committing funds in 1983 to move people with intellectual and/or developmental disabilities (IDD) out of nursing facilities and into group homes licensed as small intermediate care facilities.

Landmark legislation was passed in 1991 that established Indiana’s Medicaid Waiver programs. The Intermediate Care Facility for Mentally Retarded (ICF/MR) Waiver was the first to be introduced. By 1998, the 317 Commission had published a comprehensive HCBS plan. The next year, $39.3 million was allocated in the state budget to implement the first phase of this plan. In 2001 and 2002, respectively, the ICF/MR Waiver was replaced with the Developmental Disabilities (DD) Waiver, and the state established the Support Services (SS) Waiver. Those waivers, along with the Autism Waiver, were superseded by the budget-capped Family Supports Waiver (FWS) in 2012. That same year, the Community Integration and Habilitation (CIH) Waiver was created for individuals needing emergency placement.

Current Medicaid Waivers

After significant changes were made to the Aged and Disabled Waiver program, effective July 1, 2024, Indiana now has five Medicaid Waivers:

Medical Model Waivers:

• PathWays for Aging Waiver, for individuals aged 60 and over (formerly the Aged and Disabled (A&D) Waiver)

• Health and Wellness Waiver (H&W) for individuals aged 59 and younger (formerly the A&D Waiver)

• Traumatic Brain Injury Waiver (TBI)

Developmental Disability Waivers:

• Family Supports Waiver (FSW)

• Community Integration and Habilitation (CIH) Waiver

The PathWays Waiver is administered by the Office of Medicaid and Planning (OMPP). The other four waivers are now administered by the Bureau of Disability Services (BDS). Learn more about BDS here: in.gov/fssa/ddrs/ developmental-disability-services/. It’s worth noting that Indiana Medicaid Waivers do have expiration dates and revisions are typically made every 3 to 5 years, or as directed by the Indiana General Assembly.

It is important to understand that many stakeholders are involved in advising the state about needed changes, including individuals and families, The Arc of Indiana, the Division of Disability and Rehabilitative Services Advisory Board, and of course, legislators. Some websites still use language reflecting former waiver names and administrating agencies. For the most accurate and up to date language and information, visit The Arc of Indiana website at arcind. org/medicaid-waiver-updates/.

WHICH INDIVIDUALS DOES EACH WAIVER TARGET?

WHAT SUPPORTS DOES EACH WAIVER PROVIDE?

Indiana Developmental Disabilitie Medicaid Waivers: FSW and CIH

Individuals applying for the FSW and CIH Waivers must have an intellectual or developmental disability, or a related condition, that was diagnosed before age 22, is expected to continue indefinitely and meets the level of care that would otherwise be provided in an Intermediate Care Facility for Individuals with Intellectual and Developmental Disabilities (ICF/IIDD).

To meet level of care, an individual must have substantial functional limitations in at least three of the following six categories: mobility, use and understanding of language, selfcare, learning, self-direction, and capacity for independent living. Parental income and resources for children under 18 are NOT considered unless they are seeking Medicaid coverage prior to having a waiver. However, the income and personal resources of an individual seeking waiver service care need or three of the Activities of Daily Living, such as eating, dressing, mobility, toileting, etc.

The PathWays for Aging Waiver provides services to persons aged 60 and older. Managed Care Entities (MCEs) coordinate and approve medical care and waiver services for persons on the PathWays Waiver. The H&W Waiver provides services to persons aged 59 and younger. The TBI Waiver provides services to individuals of any age who have a diagnosis of traumatic brain injury.

Medicaid financial eligibility is based on 300% of the Supplemental Security Income (SSI) maximum. As of January 2024, the SSI maximum income is $943 per month, making Medicaid Waiver financial eligibility $2,829 per month.

The income and resources of an adult or child (under 18) receiving waiver services ARE considered in determining financial eligibility. Parental income and resources for children under 18 are NOT considered.

H&W and PathWays Waiver Service Examples:

• Adult Day Services

• Assisted Living

• Attendant Care Homemaker

• Home-delivered Meals

• Respite

• Structured Family Caregiving

• Specialized Medical Equipment & Supplies

• Transportation

TBI Waiver Service Examples:

• Adult Day Services

• Assisted Living

• Attendant Care

• Behavior Management

• Residential-Based Habilitation

• Respite

• Structured Family Caregiving

• Supported Employment

Transportation

Where do you apply for the PathWays, H&W and TBI Waiver?

Apply at your local Area Agency on Aging (AAA). Call 800-986-3505 to be directed to the AAA in your area.

How long will you have to wait for services?

The length of time that you may have to wait is due in part to the availability of state and federal funds. However, you may want to apply even if you do not immediately need services. Applying is an important part of the process in planning for the future of your loved one.

For more information, consult this list of Indiana Medicaid Waiver Fact Sheets and Check Lists:

• FSW - fssa/ddrs/files/FSWBDS-Fact-Sheets-2024.pdf

• FSW - fssa/ddrs/files/ FSW_Checklist.pdf

• CIH - https://www.in.gov/ fssa/ddrs/files/CIHW-BDSFact-Sheets-2024.pdf

• CIH - https://www.in.gov/ fssa/ddrs/files/CIHW-BDSFact-Sheets-2024.pdf

• PathWays for Agingmedicaidplanningassistance.org/ indiana-pathways-for-aging/

• H&W - in.gov/fssa/ddrs/files/BDSH-and-W-Fact-Sheet_2024.pdf

• TBI - in.gov/medicaid/members/ home-and-community-

based-services/traumaticbrain-injury-waiver.

What are the most pressing concerns about Indiana’s Medicaid Waiver system?

When the FSW replaced older waiver programs in 2012, waiting list times, which had historically been as long as a decade, began to decline significantly. But once again, as The Arc of Indiana’s Morris explained, the availability of new waiver slots is not keeping up with demand, and there is additional concern that the Family and Social Services Administration (FSSA) is not planning to fill some of the slots that are available.

The FSW, which serves individuals with IDD has a waiting list that is now 3 years long. These children and adults are missing out on critical therapies, behavior management, employment services, day services, and residential supports. Waiting lists for the Pathways Waiver and the H&W Waiver are 2.5 years long. The H&W Waiver supports some of the most medically complex and vulnerable Hoosiers under age 59. These are individuals with complex medical needs who may have rare diseases, live with ventilators, feeding tubes, mobility assistance devices, and require 24-hour care.

The Arc of Indiana’s Executive Director Kim Dodson explain the concerns and a position piece published in the Indiana capital Chronicle in July 2024.

Nearly overnight, the state is back to where it was almost 30 years ago with over 20,000 people on Medicaid Waiver waiting lists. How did we get here? Over the last two decades considerable progress has been mad in Indiana’s support system for people with disabilities, progress that other states admired and tried to model. Progress has eroded quickly over the last 9 months. State leaders need to get a handle on this as soon as possible. Medicaid waiver programs for people with IDD and physical disabilities are critical to keeping them out of institutions and with their families, or, for adults, living more independently. Waiver programs greatly enhance quality of life at a far lower cost than the alternative.

Our state officials should make every effort to maximize home and community-based waivers and ensure they offer a broad array of services. Indiana should not be proud of the fact that we are going back in time to the days of thousands of people on waiting lists to get the help they need and qualify for now.

Aggravating the situation is a serious budget shortfall. In December of 2023, the State of Indiana announced that it had overspent its Medicaid budget by one billion dollars. This particularly impacts families now served by the H&W Waiver. COVID was in part blamed for the shortfall. Because of the lack of home health care and other HCBS services during COVID th state declared a Public Health Emergency (PHE) and allowed Legally Responsible Individuals, (typically parents of minor children, and spouses) to be paid to provide attendant care for their family member with a disability. The PHE ended on May 11, 2023, and most of the flexibilities were scheduled to end on November 11, 2023.

However, in a memo dated May 10, 2023, the Family and Social Services Administration (FSSA) stated, “some waivers used pandemic emergency authorities to allow additional flexibilities (special, short-term service allowances) for parents and legal guardians to be paid for care and support provided to a minor, dependent. At this time, the end of the federal PHE will not affect parents of minor dependents acting as paid caregivers on the Aged and Disabled and Traumatic Brain Injury Waivers.”

After the budget shortfall was discovered, however, the state reversed itself: Parents of minors on the A&D and TBI Waiver would no longer be paid to provide attendant care. Parents of adult children were not affected, but their services were strictly capped at a certain number of hours.

As Dodson further expounded: Last December the State announced that Medicaid was overspent by nearly $1 billion, partly due to the lack of oversight of the Division of Aging. The Division was working outside the scope of the A&D Waiver as approved by the Centers on Medicaid and Medicare Services (CMS). Rather than taking a thoughtful, well-planned approach, the state instead blamed families and made changes that will impact the lives of people with complex medical needs, lives that are already difficult and often too short.

The decision to not allow legally responsible individuals to provide attendant care services is disrupting the lives of many on the H&W and PathWays Waivers. Families were given the choice to either find often nonexistent alternative attendant care providers or continue to provide care through a service not equipped to address those with complex medical needs.

As the transition to new services began on July 1, many families already living in a stressful situation found providers were not ready and did not have critical services in place. Some families are still waiting on transition plans and formal notices from their case managers.

Additional information on changes made to Indiana’s Medicaid Waivers is available on this fact sheet developed by The Arc of Indiana: arcind.org/news/changes-tomedicaid-waiver-fact-sheets

NOTE! An Important Amendment to this story:

On September 18, 2024, investigative Indianapolis Star reporters, Tony Cook and Kayla Dwyer, uncovered a very upsetting finding regarding the Indiana Medicaid budget shortfall. Find the full article here: https://www.indystar.com/story/ news/investigations/2024/09/18/ lawsuit-state-medicaid-programoverbilled-by-as-much-as-700million/75278870007/

“Whistleblowers: Indiana Medicaid overpaid up to $700M amid lobbying, political pressure”

A summary of the article is found in the first two paragraphs of the article.

A federal whistleblower lawsuit accuses insurance companies and hospitals of defrauding Indiana’s Medicaid program of up to $700 million—money that could have helped prevent a $1 billion shortfall that prompted state officials to cut services.

The alleged overpayments were first flagged by the state’s fraud detection contractor, but the lawsuit claims industry-friendly officials in the state’s Medicaid office bowed to political pressure and in 2017 began curtailing efforts to recoup the improper payments. The lawsuit identifies as much as $724 million in suspected fraud, but acknowledges there could be duplications in the claims data or other factors that would reduce the potential losses to the state.

WHAT CAN I DO?

• If you think you or your loved one qualifies for a Medicaid Waiver, apply.

• If you are currently on a Medicaid Waiver waiting list, make sure BDS or your local AAA always has your correct address, phone number and email.

• You can check your status on the FSW waiting list and keep your information updated through the state’s waiting list web portal at:

• in.gov/fssa/ddrs/informationfor-individuals-and-families/ bdds-waitlist-portal

• If your date of application is not provided on your record, or if you do not have access to the internet, contact your local BDS office by calling 800-545-7763.

• Keep information up to date for the Medical Model (PathWays for Aging, H&W and TBI) Waivers by contacting your local Area Agency on Aging (AAA). Call 800-986-3505 to be directed to the AAA in your area.

• Remember, there is no waiting list for the CIH Waiver as it is an “emergency waiver.”

• Follow updates on the FSSA, OMPP, and The Arc Indiana websites and on social media. Attend in-person or virtual Town Halls or webinars sponsored by The Arc of Indiana or BDS so your concerns can be heard.

• The Indiana General Assembly makes decisions about Indiana’s Medicaid Waiver programs. Communicate with your state legislators and let them know how changes to waivers impact your loved one and family. Find your state legislators here: iga. in.gov/information/find-legislators

• Join social media groups where families are sharing resources, information, and can pose questions in a safe space.

• Call The Arc of Indiana at 317-9772375 and ask to speak with a family advocate if you need assistance. This webpage has links to information, including past webinars, explaining everything from Medicaid Waivers to social security to guardianship and much more. arcind.org/ourprograms/the-arc-advocacy-network/

GLOSSARY OF TERMS

• AAA—Area on Aging Agency

• A&D Waiver—Aged and Disabled Waiver

• BDS—Bureau of Disabilities

• BDDS—Bureau of Developmental Disabilities

• CIH—Community Integration and Habilitation Waiver

• DDRS—Division of Disability and Rehabilitative Services.

• FSSA—Family Social Services Administration

• FSW—Family Supports Waiver

• H&W Waiver—Health and Wellness Waiver

• HCBS Waivers—Home and Community Based Serves Waivers

• ICF/MR—Immediate Care Facility/Mental Retardation

• OMPP— Office of Medicaid and Planning

• TBI Waiver—Traumatic Brain Injury Waiver

WORKS CITED

• American Council on Aging. (2024). Indiana Medicaid’s planning for aging: Availability, benefits, and eligibility. American Council on Aging. medicaidplanningassistance. org/indiana-pathways-for-aging/

• The Arc of Indiana. (2024). 2024 Medicaid and Medicaid waiver changes. arcind.org/medicaid-waiver-updates/

• The Arc of Indiana. (2024). Changes to Indiana Medicaid waiver fact sheets. arcind.org/news/changes-tomedicaid-waiver-fact-sheets/

• Dodson, K. (2024, July 29). Waiver changes bring frustrating summer to Indiana families. Capitol Chronicle. indianacapitalchronicle.com/2024/07/29/waiverchanges-bring-frustrating-summer-to-indiana-families/

• Downard, W. (2024, Sept.3). Federal judge rules FSSA must provide modified relief for families in attendant care lawsuit. Document 54. Capitol Chronicle. https:// indianacapitalchronicle.com/2024/09/03/federal-judgerules-fssa-must-provide-modified-relief-for-families-inattendant-care-lawsuit/

• Family Support Services Administration (FSSA). (2024). CIH and FSW fact sheets. FSSA Disability Services. in.gov/ fssa/ddrs/developmental-disability-services/

• Family and Support Services Administration (FSSA). 2024. Health&Wellness waiver fact sheet. FSSA Bureau of Disability Services. in.gov/fssa/ddrs/files/BDS-H-and-WFact-Sheet_2024.pdf

• Family and Support Services Administration (FSSA). (2023, May 10). Memo: Home and community-based services waivers: Paid parent caregivers of minor dependents and the end of public health emergency FAQ. PDF, 1-4.

• Indiana Medicaid for Members. (2024). Traumatic brain injury waiver. In.gov. in.gov/medicaid/members/ home-and-community-based-services/traumatic-braininjury-waiver/

• Wheeler, M. (2021). Indiana’s Medicaid waiver programs: Home and community-based services for adults and children. Indiana Institute on Disability. iidc.indiana.edu/irca/articles/medicaid-waiver-programshome-and-community-based-services-for-adults-andchildren.html#:~:text=The%20waiver%20program%20 %22waives%22%20the,other%20needed%20 supports%20and%20services

• Cook, T. & Dwyer, K. (2024, Sept. 18). Whistleblowers: Indiana medicaid overpaid up to $700M amid lobbying, political pressure. Indianapolis Star. https://www.indystar. com/story/news/investigations/2024/09/18/lawsuitstate-medicaid-program-overbilled-by-as-much-as-700million/75278870007/