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Data Note: Data Do Not Support Relationship Between Medicaid Expansion Status and Home and Community-Based Services Waiver Waiting Lists

Some have said that state choices about whether to adopt the ACA’s Medicaid expansion come at the expense of providing Medicaid home and community-based services (HCBS). Since 2002, the Kaiser Family Foundation has surveyed states about their HCBS waiver waiting lists. All states offer at least one HCBS waiver for seniors and people with disabilities today. States choose how many people to serve under these waivers, and their ability to limit enrollment can result in waiting lists when the number of people seeking services exceeds the number of waiver slots. This analysis examines the most recent data available, including HCBS waiver waiting list data for 2015 and 2016. The data do not support a relationship between a state’s Medicaid expansion status, which is primarily financed with federal funds, and changes in its HCBS waiver waiting list.

Among the 21 states that experienced an #HCBS waiver waiting list increase from 2015 to 2016, the average increase was lower in #Medicaid expansion states compared to non-expansion states.

Waiting List Changes and Adoption of Medicaid Expansion

Among the 21 states that experienced an HCBS waiver waiting list increase from 2015 to 2016, the average increase was lower in expansion states compared to non-expansion states (Figure 1). The average waiting list increase across 13 expansion states (Arkansas, California, Connecticut, Iowa, Kentucky, Louisiana, Michigan, North Dakota, New Hampshire, New Mexico, Nevada, Ohio, and Oregon) was 1,756 people and ranged from 3 people in North Dakota to 11,101 in Louisiana.1 The average waiting list increase across eight non-expansion states (Alabama, Maine,2 Mississippi, Nebraska, Oklahoma, South Carolina, Texas, and Utah) was 3,502 people and ranged from 302 people in Utah to 11,806 people in Texas. Table 1 contains waiting list data by waiver population and state for 2016.  In addition, the Medicaid expansion has enabled some people who were not previously eligible for coverage to access needed HCBS, such as home health or personal care state plan services.3

Figure 1: Average Medicaid HCBS waiver waiting list increase from 2015 to 2016, by ACA expansion status.

Most ACA expansion states (56%, or 18 of 324) either have no HCBS waiver waiting list or had a decrease in their waiting list from 2015 to 2016 (Figure 2). Eight expansion states (Arizona, DC, Delaware, Hawaii, Massachusetts, Rhode Island, Vermont, and Washington) had no HCBS waiver waiting list in 2015 or 2016; seven of these states (all except Washington) also had no waiting list in 2014, the year that they implemented the expansion. Ten expansion states (Alaska, Colorado, Illinois, Indiana, Maryland, Minnesota, Montana, New Jersey, Pennsylvania, and West Virginia) experienced a decrease in their HCBS waiver waiting lists from 2015 to 2016. New Jersey completely cleared its waiting list between 2015 and 2016, and the other nine states experienced double digit percent decreases, ranging from -15% in Montana to -97% in Minnesota. Three of these states (Alaska, Indiana, and Pennsylvania) also experienced waiting list decreases from 2014 to 2015.5

Figure 2: Changes in HCBS waiver waiting lists from 2015 to 2016, by ACA expansion status.

Medicaid HCBS waiver waiting lists pre-date the ACA’s Medicaid expansion, which became effective in most states in 2014.6 Over 656,000 people in 39 states were on HCBS waiver waiting lists in 2016 (Figure 3); 35% of total HCBS waiver waiting list enrollment (232,000 people) are in Texas, a non-expansion state. Not all people on waiting lists may be eligible for Medicaid waiver coverage, as many states do not determine eligibility until a waiver slot becomes available. As of 2016, just over half (53%) of waivers with waiting lists screened individuals for eligibility before being placed or while on a waiting list. However, most people on HCBS waiver waiting lists are receiving other Medicaid services. Nearly 90 percent of waivers with waiting lists provided non-waiver services (i.e., Medicaid state plan services, such as personal care) to people who were waiting for waiver services.

Figure 3: Medicaid HCBS waiver waiting lists, by target population, 2006-2016.

Table 1:  Medicaid Section 1915 (c) and 1115 Waiver Waiting List Enrollment By Target Population and State, 2016


I/DD Seniors Seniors/
Phys. Dis.
Phys. Dis. Children HIV/AIDS Mental Health TBI/SCI Total
Alaska 535 535
Arizona 0
Arkansas 3,221 57 3,278
California 1,898 2,100 20 70 0 0 4,088
Colorado 2,869 325 3,194
Connecticut 1,649 1,000 204 50 2,903
Delaware 0
DC 0
Hawaii 0
Illinois 8,470 10,693 19,163
Indiana 1,584 43 1,627
Iowa 2,427 4,352 1,257 892 8,928
Kentucky 8,181 9 8,190
Louisiana 17,590 47,876 8,463 73,929
Maryland 7,864 23,000 5,292 36,156
Massachusetts 0
Michigan 3,311 3,311
Minnesota 121 7 128
Montana 1,130 117 62 1,309
Nevada 752 449 171 1,372
New Hampshire 151 11 78 20 260
New Jersey 0
New Mexico* 3,700 16,370 20,070
New York Unknown Unknown 0
North Dakota 3 3
Ohio 64,546 64,546
Oregon 134 134
Pennsylvania 9,728 9,728
Rhode Island 0
Vermont 0
Washington 0
West Virginia 1,260 274 6 1,540
Total Expansion State Waiting List Enrollment 135,778 25,347 67,842 7,630 25,386 70 1,319 1,020 264,392
Alabama Unknown 5,080 204 5,284
Florida 20,751 0 46,412 315 67,479
Georgia 8,698 1,468 104 10,270
Idaho 0
Kansas 3,452 438 3,890
Maine 1,000 1,000
Mississippi 1,441 6,958 1,013 69 9,481
Missouri 0
Nebraska 2,062 2,062
North Carolina 10,000 2,068 12,068
Oklahoma 7,538 31 7,569
South Carolina 11,275 11,725
South Dakota 0
Tennessee 5,813 5,813
Texas* 196,248 16,599 19,221 232,068
Utah 2,387 64 92 2,543
Virginia 16,583 16,583
Wisconsin 507 1,235 2,474 4,216
Wyoming 202 202
Total Non-Expansion State Waiting List Enrollment 287,957 0 79,851 1,759 21,759 476 392,253
NOTES: Data may not sum to total due to rounding. I/DD – Intellectual/Developmental Disability; TBI/SCI – Traumatic Brain Injury/Spinal Cord Injury. “Unknown” indicates there was a waiting list but number of persons is unknown. A dash indicates that there was no operational § 1915(c) waiver for the target enrollment group or waiting list. AZ, RI, and VT do not have § 1915(c) waivers but provide similar HCBS in §1115. *NM and TX reported waiting lists for seniors/physical disabilities in their §1115 waivers. SOURCE: KFF analysis of Medicaid HCBS Program survey.
  1. New York is categorized as “no change” because it reports a waiver waiting list but did not report the number of individuals on the waiting list in 2015 or 2016.

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  2. For purposes of this analysis, Maine is considered a non-expansion state because it has not yet implemented the expansion.

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  3. Most expansion states have opted to “align” their expansion adult benefit package with their traditional state plan benefit package, by offering all state plan services to expansion adults if medically necessary. Previous analysis shows that nearly six in 10 (57%) nonelderly Medicaid adults have a disability but do not receive federal Supplemental Security Income (SSI) cash assistance benefits, meaning that they are eligible for Medicaid through another pathway, such as the Medicaid expansion in states that have adopted that pathway.

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  4. For purposes of this analysis, Maine is considered a non-expansion state because it has not yet implemented the expansion.

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  5. Indiana implemented expansion in 2015.

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  6. Medicaid expansion coverage became effective on January 1, 2014 in 25 states. Two states implemented in 2014 (Michigan, April 1, 2014; and New Hampshire, August 15, 2014). Three states implemented in 2015 (Pennsylvania, January 1, 2015; Indiana, February 1, 2015; and Alaska, September 1, 2015). Two states implemented in 2016 (Montana, January 1, 2016; and Louisiana, July 1, 2016). Maine has adopted but not yet implemented expansion.

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