Day 5: Wait Lists in Medicaid

November 5, 2011

By Sean Coffey, Policy Specialist, Family Caregiver Alliance

While researching services for a caregiver in Florida, I stumbled upon Arc Florida’s webpage, and a section entitled “Wanting to Move to Florida?” that cautions people:

If you live elsewhere and are receiving Medicaid Waiver services, your waiver services will NOT transfer to Florida.  You will still be eligible for Medicaid State Plan services after establishing residency in Florida, but waiver services do not transfer from state to state.

If you decide to move here anyway, you should know that we currently have over 19,000 individuals on a list already waiting to receive waiver services [emphasis added].  You will not be placed in line in front of these other individuals, so it would be best to consider what services you currently have in place and decide if you can do without them if you come to Florida.

If you decide to move anyway, you will have to take time, about six months to establish residency before you can apply to get on a waiting list for services.  At a minimum, it will most likely be seven years before services would begin [emphasis added].

In March 2011, Disability Rights Florida announced a class action lawsuit against Florida, seeking “declaratory and injunctive relief on behalf of over 19,000 individuals with developmental disabilities (“DD”) who are awaiting DD Medicaid Waiver services.”

While this note is somewhat shocking, Florida is not the only state with wait lists in its Medicaid Waiver programs.

Services and supports that help family caregivers and their loved ones to remain in their home (where they’d rather be) are known as Home and Community Based Services (HCBS), and may include services like home health care, respite, and adult day health programs (and others).  Medicaid Waivers are one way to offer HCBS. Medicaid waivers aren’t legally allowed to cost more than nursing home care, and in most cases, are less expensive than nursing home care.

While these programs can provide excellent support for family caregivers, waiting lists can mean a delay in receiving services. The Kaiser Commission on Medicaid and the Uninsured released a report in February of this year with 2009 data on state Medicaid Waiver programs.  The survey found that 39 states had waiting lists for 139 Medicaid waiver programs, with a total of 365,553 people on wait lists.

There were 221,898 people on wait lists for Medicaid Waivers for Mentally Retarded/Developmentally Disabled (MR/DD) programs, with an average wait time of 35 months (that’s almost 3 years). Aged/Aged and Disabled Waivers had 107,563 people on their wait lists with an average wait time of six months.

On the positive side, the authors note that 70% of all waivers with waiting lists screen individuals for Medicaid waiver eligibility before placing them on the waiting list.  They also explain: “Eighty-nine percent of all waivers with waiting lists provided non-waiver services such as state plan services to Medicaid eligible individuals while they waited for waiver services.”

However, Kaiser also released its annual Medicaid survey a few weeks ago, and it found that budget pressures on states have also translated into cuts in programs that serve family caregivers and their loved ones.  For Fiscal Year 2011, seven states (ID, NH, NC, OR, RI, SC, WV) made additional restrictions or reductions to their HCBS programs, and seven states (AZ, MT, MN, RI, SC, VA, WI) also have plans to make restrictions or reductions for FY 2012. These restrictions include Idaho eliminating coverage for home health skilled nursing in its Aged and Disabled Waiver and Virginia, which is reducing allowable hours for respite care from 720 down to 480 per year.

A recent Op-Ed from the executive director of the National Association of Medicaid directors and Kansas’ Division of Health Care Finance explained that the expiration of the federal stimulus money means that state Medicaid expenses are projected to increase 29% while states face a budget shortfall totaling $175 billion for 2012-13.

In looking at the tremendous budget pressures that states are facing, it makes sense why there are waiting lists, restrictions, and reductions in programs that help support family caregivers.  At the same time, if it’s your loved one that’s in need of services or support, it can be a tough pill to swallow to find out that they may not receive those services until their number is called on the waiting list.

Do you have experience with waiting lists?  Any advice or suggestions you would share for other family caregivers who are applying for Medicaid long-term care programs?

Editor’s Note: The Kaiser Commission on Medicaid and the Uninsured released updated data on Medicaid HCBS programs in December, 2011. The report, Medicaid Home and Community-Based Services Programs: Data Update, provides 2010 data on Medicaid HCBS programs, as well as trends from 1999-2008.

According to the report, the number of individuals on waiver waiting lists increased by 17% from 2009 to 2010. There were a total of 149 waivers with 428,571 individuals on waiver waiting lists.

  • The 103 waivers serving the MR/DD population had a total of 268,220 on their wait lists with an average wait time of 3 years.
  • There are 6 waivers for the aged, with 24,453 people on the wait lists and an average wait time of 12 months.
  • The 27 waivers for the Aged/Disabled had a total of 96,696 people on their wait lists with an average wait time of 9 months.
  • The 12 waivers for TBI/SCI had 2,666 people on their wait lists with an average wait time of 13 months.

The authors note that the increase in number of people on wait lists “has implications for states’ compliance with the Olmstead decision.”  To see the full report, visit: http://www.kff.org/medicaid/upload/7720-05.pdf

6 comments to Day 5: Wait Lists in Medicaid

  • [...] blog.caregiver.org This entry was posted in Nursing Homes In Oregon and tagged Lists, Medicaid, Wait by caregiveroregon. Bookmark the permalink. [...]

  • How many states are on the waiting lists and what states are they?

  • Sean Coffey, Policy Specialist

    Hello Judith,
    You would need to consult the Kaiser Commission report. The data on the wait lists (i.e. in which waiver programs, what state, how many people. how long, etc) is at the end of the report.
    Thank you,
    Sean Coffey
    Policy Specialist

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  • Lindsey Dykstra

    We have a 24 year old son with cerebral palsy and currently live in Tennessee, having moved here 10 years ago from Florida. He is on the Medicaid waiting list here and has been since he turned 18. As we understand it and have been informed in order to be ranked “urgent” (eligible) he would need to be a danger to himself or others, homeless or in danger of becoming homeless. Simply put we do not qualify and as long as he has a living relative to care for him he will not qualify. We personally know of one family that had to declare their adult child a danger to themselves or others but still waited 6 years to receive services in Tennessee.
    Thank you for the valuable information on Florida.

  • Dorothy

    My 27 year old son had Medicare and Medicaid due to a disability and was a Florida resident when he became a quadriplegic. We applied for the waiver program and received a letter that he was approved to be put on a waiting list with no indication of how long.

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