United Spinal Association advocates for policies that ensure access to quality, affordable healthcare and support services that meet the needs of people with spinal cord injuries and disorders and other disabilities.
Medicaid provides health and services coverage to nearly 10 million non-elderly people with disabilities and nearly 4 million Medicare beneficiaries with disabilities. Medicaid funds most long-term services and supports (LTSS), including personal care attendants, home modifications, and transportation. Many states, seeking to reduce costs, have instituted or are exploring a new model called Medicaid Managed Long-Term Services and Supports (MLTSS).
Under MLTSS all healthcare services and supports are managed by a third-party organization. MLTSS can improve and expand access to services, but there are risks. There may be changes in the list of providers that consumers may visit. If there are harmful cuts or a decrease in quality, a consumer voice is vital to demanding the quality care that consumers deserve. United Spinal supports efficient provision of services, but not at the expense of people with disabilities who rely on those services and supports to live full lives in the community.
United Spinal and coalition partners have developed principles for providing quality managed care services. United Spinal has shared these principles, our concerns, and consumer stories with state and federal agency officials, and other policymakers, including the Centers for Medicare and Medicaid Services (CMS) and the Administration on Community Living (ACL).
If you are affected by Medicaid managed care, or if you have had a positive experience, and would like to share your story with United Spinal, please contact Carol Tyson.
Advocacy Issue Updates
05/12/2015: The number of States with MLTSS programs increases from 8 in 2004 to 25 in 2015. States currently operating MLTSS: Arizona, California, Delaware, Florida, Georgia, Hawaii, Idaho, Illinois, Kansas, Louisiana, Massachusetts, Michigan, Minnesota, Nebraska, New Hampshire, New Jersey, New Mexico, New York, North Carolina, Ohio, Oregon, Rhode Island, Tennessee, Texas, and Wisconsin. See NASUAD’s state integration tracker for more info.01/01/2014: The number of States with MLTSS programs increases from 8 in 2004 to 21 in 2014. States currently operating MLTSS: Arizona, California, Delaware, Florida, Hawaii, Illinois, Kansas, Massachusetts, Michigan, Minnesota, North Carolina, New Hampshire, New Jersey, New Mexico, New York, Ohio, Pennsylvania, Tennessee, Texas, Washington, and Wisconsin. Nebraska is developing a plan with a targeted implementation date of July 2015. See NASUAD’s state integration tracker for more info.
12/24/2013: Hard work and advocacy pays off. UnitedHealthcare reinstates United Spinal chapter policy adviser Finn Bullers’ personal care attendant hours to 168 hours per week from the proposed 40.
12/20/2013: United Spinal submits letter to MACPAC regarding the 12/20 public meeting and future MLTSS research and reporting. United Spinal requests Commissioners consider consumer needs, and strive to include a consumer voice in research and definitions of long term care success.
12/13/2013: The National Council on Disability submits a letter to CMS and Kansas state officials regarding KanCare concerns.
12/12/2013: United Spinal attends the Medicaid and CHIP Payment and Access Commission (MACPAC) public meeting. Commissioners discuss MLTSS research and future reporting.
12/06/2013: United Spinal submits letter to Kansas officials and CMS and shares with the Administration on Community Living. The letter addresses United Spinal concerns regarding KanCare, cuts in services and hours, transportation services delays and overall decrease in quality.
12/05/2013: National Council on Disability (NCD) holds a public hearing in Kansas for consumers and other stakeholders to share stories. Finn Bullers testifies regarding KanCare implementation and cuts to services.
11/25/2013: Second KanCare Oversight committee hearing held, Finn Bullers continues to speak out about cuts to services.
09/17/2013: Community Catalyst unveils a Checklist for making state’s managed care programs consumer-focused. The checklist includes detailed questions you can ask about your state managed care program and can be used to engage stakeholders and state officials in a dialogue.
10/07/2013: KanCare Oversight Committee Hearing held. United Spinal’s Greater Kansas City Spinal Cord Injury Association policy adviser Finn Bullers takes the lead and advocates for maintenance of necessary services and supports.
08/2013: United Spinal member Finn Bullers is notified by his managed care organization that his personal care attendant hours will be cut from 168 hours per week to 40 hours per week. Mr. Bullers is the policy adviser for the greater Kansas City Spinal Cord Injury Association, a program of United Spinal Association
05/20/2013: CMS releases Guidance to States Using 1115 Demonstrations or 1915(b) Waivers for Managed Long Term Services and Supports Programs. The guidance includes 10 key elements that will be used in reviewing state’s plans and current programs.
01/01/2013: Kansas begins providing Medicaid services through KanCare. Consumers with I/DD set to begin receiving managed care in January 2014.
05/11/2012: Consortium for Citizens with Disabilities (CCD) releases Principles and Recommendations for Transitioning People with Disabilities into Medicaid Managed Care (United Spinal is a member).
03/01/2012: The National Disability Leadership Alliance (NDLA) releases Principles for Creating Coordinated Quality in Medicaid Managed Care Programs for those Living with Significant Disabilities. The NDLA is a coalition of 14 disability organizations led by individuals with disabilities, including United Spinal.