Please, May I Have More Data?

By Lorene Reagan
Director of Public Relations, IntellectAbility

Rate-setting considerations for long-term services and supports for people with intellectual and developmental disabilities.

Most actuaries working in the Medicaid space are well acquainted with the acute care rate-setting process. But many may not be familiar with rate setting for Medicaid long-term support and services (LTSS), Home and community-based services (HCBS) for people with intellectual and developmental disabilities (IDD), or the data sources available to inform the rate-setting process. This article introduces the IDD population, their support needs, the most used HCBS services, and the tools that can be used to inform support needs and the IDD-HCBS rate setting process.

Medicaid is the largest funder of LTSS in the U.S. All 50 states and the District of Columbia provide services funded by one or more Medicaid HCBS Waivers, specifically designed to “waive” the provisions within federal Medicaid regulations that historically only paid for services provided in facilities and institutions. Medicaid LTSS waivers allow people with IDD to live in community settings rather than in institutions, facilitating opportunities for community integration and improved quality of life.

According to data published in 2021 by the Institute on Community Integration, an estimated 7.43 million people with IDD live in the United States, and approximately 17% receive services through state IDD agencies. This group’s estimated Medicaid HCBS waiver expenditures were $42.29 billion in 2018.

Some people with IDD live independently in the community and don’t require formal services or support.
Others need support for daily activities such as dressing, bathing, and eating, and for incidental activities such as shopping, cooking, cleaning, and money management. Supports may also be provided to help a person secure and maintain employment, develop relationships, and participate in hobbies, sports, clubs, or worship. There may also be a need for health-related assistance with medications, ambulation, feeding, and other activities to maintain optimal health and manage health risks unique to people with IDD.

Unlike in the past, people with IDD live primarily in community-based settings, not in institutions or nursing homes. Most share a residence with a related family member; some live in group homes, host homes, or adult foster care settings, while others lease or own their own homes.

Services commonly provided under state Medicaid HCBS waiver programs for people with IDD include case management, residential habilitation, community support, personal care, day habilitation, financial management, job coaching, home and vehicle modifications, and assistive technology. Many waivers include self-direct services through which the person selects, hires, and manages their staff and service budget.

Most state Medicaid programs operate their HCBS program for people with IDD using a traditional state-administered Fee-for-Service payment approach, but this is changing with the advent of managed long-term services and supports (MLTSS) programs which employ capitated rates. Unfortunately, there isn’t much experience in this area; while 22 states operated MLTSS programs in 2019, only 10 included the IDD population.

The rate-setting process for HCBS LTSS services is unique and, unlike the approach used in acute care rate setting, focuses mainly on the amount, level, and type of functional, health-related, social, behavioral health, and personal care supports needed for the person with IDD to live successfully in the community.

Each state Medicaid program utilizes the results of various functional screening and assessment tools and other instruments for non-rate setting activities to determine LTSS service eligibility, evaluate level of care, manage health risk, measure acuity, inform resource allocation, and develop service plans. Some are nationally recognized, valid, and reliable instruments and some are “homegrown” tools, having been developed internally. Others are “hybrid” tools based on standardized instruments which the state has customized to meet its unique needs.

In Fee-for-Service programs, states often “tier” LTSS HCBS services. For example, states may have two levels of case management within their Medicaid waiver. A “basic” level and rate are used for people whose needs are more routine, and an “enhanced” level and rate is allowed for those with complex needs, based on assessment findings. In MLTSS, the results of functional assessments and other related data could inform the risk adjustment component of the capitation payment.

As a non-actuary providing subject matter expertise for Medicaid LTSS HCBS rate-setting activities, I learned from my actuary colleagues the value of identifying multiple relevant, valid, and reliable data sources to inform the rate-setting process.

The following are examples of some of the validated tools currently in use that rate-setting teams should consider informing IDD-specific rate setting activities:

  • HRST—Health Risk Screening Tool: web-based health risk instrument that identifies health risks, that, if not addressed, are associated with preventable morbidity and mortality in people with IDD. Six levels of risk are assigned.
  • SIS-A®—Supports Intensity Scale: Adult Version®: standardized assessment tool designed to measure the pattern and intensity of supports that a person age 16 years and older with IDD requires to be successful in community settings. A numerical Support Needs Index is assigned.
  • ICAP—Inventory for Client and Agency Planning: measures adaptive and maladaptive behaviors and is designed for use from infancy to adulthood. Scores that can determine the level of supervision a person needs are generated.

Rate setting for IDD-HCBS is complex and requires multiple inputs and a rate setting team that understands the needs and priorities of people with IDD. Knowing how to select resources that accurately identify support needs, including those required to promote community inclusion and manage maladaptive behaviors, is vital. In addition, because people with IDD have higher incidences of chronic health conditions, lower life expectancies, and difficulty routinely accessing clinically competent healthcare, health risk-related data plays an important role in determining rates. Before selecting the tools to be used in the rate-setting process, the team should evaluate the validity and reliability of each tool and its fitness for use in the rate-setting process.


Published by American Academy of Actuaries – Contingencies. Click here to view the article.

Achieving Educational Equity in Universities With Person-Centered Thinking Training

Learn how person-centered training can help students with intellectual or developmental disabilities.

Josie was a 19-year-old student at a local university. She was known for her positive attitude, kind heart, and school spirit. So much so that she had a few pairs of colorful glasses to match her socks and gameday jerseys. Connecting with her sorority sisters and being a part of campus life was essential to Josie. Most of all, she loved animals, particularly horses. Early on, she mentioned that her dream was to be a veterinarian. Josie ultimately found a place where she was welcomed and valued for her contributions, but it didn’t begin that way.

Josie has Down Syndrome and was a part of the university’s Inclusive Post-Secondary Education (IPSE) program. These programs offer an alternative to typical pre-vocational programs for students with Intellectual/ Developmental Disabilities (IDD). While each program is unique, the most common goals are inclusion and gainful employment.

According to the Journal for Post-Secondary Education and Disability, approximately 77 percent of IPSE-supported students found gainful employment upon completion compared to 27 percent of people with IDD. They weren’t a part of such programs (Avellone, Camden, Taylor, & Wehmen, 2021). Furthermore, when IPSE programs employed Person-Centered Practices, 100 percent of those who found employment were gainfully employed as opposed to those in sheltered workshops (Zafft, 2004).

Josie’s Transition to College

Like many students, Josie’s transition to college was challenging. She began with hope, but things weren’t going well by midterm. Josie described instructors as friendly but rigid, and while others were kind, she didn’t feel understood or included. She said, “other students treated me like a little kid, and my job coach (Gene) told me I may need to find another program.”

Those who supported Josie weren’t meaning to be harsh. There was a breakdown in communication and more to the story. Josie had difficulty with words. When her peer mentors (other students who provided support) misunderstood her, they would finish her sentences and reassure her with kind words and maybe a hug. Josie felt this was condescending. Gene wanted her to succeed but could only work with the internships available. Josie wanted to work with a veterinarian, but that wasn’t an option. So, Gene told her about a dog boarding facility with a pre-vocational program.

Josie’s parents were concerned but convinced her to continue until the academic year ended. She adjusted but wasn’t content. She kept to herself, and when in social settings, she often wouldn’t speak. She stopped turning in assignments and asked her peer mentors to do her homework. She had an internship at a local business office but found the work boring and didn’t connect with anyone. All of Josie’s essential needs were met. She felt safe… but miserable. As May approached, Josie told the ISPE program director, Evalyn, that she didn’t think she’d be returning in the fall.

After meeting with her team, Evalyn believed everyone supporting Josie meant well but didn’t know how to help. Evalyn reviewed Josie’sadmission assessments. They had valuable information, but there was a lot to digest. Also, the assessments were in clinical language and weren’t specific to her current social needs. Asking peer-mentors to data-mine so much information was unreasonable. It became clear to Evalyn that her team needed better information and more training. Fortunately, Evalyn and a colleague had taken a Person-Centered Practices class two years prior. She contacted the class facilitator for help, and they met online to review best practices.



Person-Centeredness is about people with disabilities having ownership and reasonable control of their own lives. The goal of support is to get people closer to the things they value and, in the process, for the person to have an equitable experience with their peers. For that to happen, two foundations are required, a Person-Centered mindset and Person-Centered skill sets.

Evalyn believed her team members had a Person-Centered mindset. Respecting students as capable young adults was a prerequisite for all who provided support. Her team members had big hearts and great intentions but needed the training to put Person-Centered skill sets into practice.

Person-Centered skills include discovery skills which use observation instead of just asking questions to gather information about what the person values and how to help. Without discovery, plans won’t be specific and usually reflect what others value for the person. Learning skills are required to deal with changes like new information, obstacles, and conflict. Without learning skills, plans get off track. Management skills clarify responsibilities for those who provide support. Without management skills, peer mentors won’t find the proper balance, offering too little support, leading to anxiety or too much support, promoting helplessness.


Finally, given how often peer-mentors change, Person-Centeredness requires the information gathered to be easily accessible in a Person-Centered Description (PCD). Unlike traditional assessments, a PCD is organized, concise, and in everyday language. Anyone providing support can quickly and easily understand how to help.

The following week Evalyn scheduled Person-Centered Training for her entire team.

Soon after, Evalyn reached out to Josie and her parents. Using discovery skills learned during training, the team realized Josie wasn’t interested in being a veterinarian but wanted to work with horses. Gene found a stable where Josie could work and learn equestrian care. Peer mentors stopped finishing Josie’s sentences and learned to listen through observation. Using learning skills, the team helped her navigate sorority pledge week. Finally, management skills were employed, so support wasn’t provided where it wasn’t needed. This information was kept current in a brief Person-Centered Description and reviewed every time Josie was matched with a new peer mentor.

Josie returned in the fall. There were obstacles and difficult days for sure. Still, by Homecoming, Josie was waving to others on her sorority’s float in her colorful glasses that matched her socks and favorite jersey. Josie was back to herself. After graduation, Josie found a job where she helps new owners learn to care for their horses.


Training in Person-Centered Support doesn’t make life perfect,
but it made life better for Josie and everyone who supported her.




Published by Training Magazine. Click here to view the published article. 



Avellone, L., Camden, J., Taylor, J., & Wehmen, P. (2021). Employment Outcomes for Students with Intellectual Disabilities in Postsecondary Education Programs: A Scoping Review. Journal of Postsecondary Education and Disability, 6-8.

Zafft, C. H. (2004). College Career Connection: A Study of Youth with Intellectual Disabilities and the Impact of Postsecondary Education. Education and Training in Developmental Disabilities, 39,45-53.