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Intellectual and Developmental Disabilities in the ACA Era

Wednesday, December 18, 2013

The Patient Protection and Affordable Care Act (ACA) contains several provisions that address access to community based services for the 4.5 million people in the U.S. with intellectual and developmental disabilities (I/DD). Many of these provisions are aimed at balancing the array of services between those offered in institutions and those in the community.

However, states have long waiting lists for community-based services. In addition, there are vast disparities in services offered and authorized from community to community, even though Medicaid finances over 70 percent of the cost of services for this population.

Moreover, this group has complex and wide-ranging service needs both in acute care and long term services and supports (LTSS), making their care costly. To help contain costs, states are increasingly moving to Medicaid managed care.

Do the provisions of the ACA have the potential to improve access to appropriate care for people with intellectual and developmental disabilities? How will Medicaid expansion, where it occurs, affect the program’s role in serving this population? How are states managing their waiting lists for community-based services? How does the availability of health insurance through the exchanges change the landscape?

A distinguished panel of experts addressed these and related questions.

Barbara Edwards, director, Disabled and Elderly Health Programs Group, Centers for Medicare & Medicaid Services, explained initiatives supported by CMS through the Medicaid program to provide services to persons with intellectual/developmental disabilities.

Ari Ne’eman, president, Autistic Self Advocacy Network (ASAN), provided an overview of provisions in the ACA that have changed, or could change, the landscape regarding access to services for this population.

James Bart, ombudsman, KanCare (Kansas Medicaid program), talked about the transition to managed care in Kansas, the ombudsman program and various system changes.

Deanna Okrent of the Alliance and David Donahue of LifeShare(Centene) moderated the discussion

Contact: Marilyn Serafini (202)789-2300

Follow the briefing on Twitter: #disabilitiesACA  

The event was sponsored by the nonpartisan Alliance for Health Reform and The Centene Corporation.

Transcript, Event Summary and/or Webcast and Podcast

Transcript: Full Transcript (Adobe Acrobat PDF), 12/18/2013
Full Webcast/Podcast: Full Video

Speaker Presentations

Bart Presentation (Adobe Acrobat PDF), 12/18/2013
Edwards Presentation (Adobe Acrobat PDF), 12/18/2013
Ne'eman Presentation (Adobe Acrobat PDF), 12/18/2013

(If you want to download one or more slides from these presentations, contact us at info@allhealth or click here for instructions.)

Source Materials

Agenda (Adobe Acrobat PDF), , 12/18/2013
Materials List (Adobe Acrobat PDF), , 12/18/2013
Source List (Adobe Acrobat PDF), , 12/18/2013
Speaker Biographies (Adobe Acrobat PDF), , 12/18/2013

Offsite Materials (briefing documents saved on other websites)

Kentucky’s Rush Into Medicaid Managed Care: A Cautionary Tale For Other States, Kaiser Health News, 7/15/2013
KanCare: Managed Care Contracts Aim to Achieve Savings and Quality Improvement (Adobe Acrobat PDF),Kansas Health Institute, 7/1/2013
Managed Long-Term Services and Supports (Adobe Acrobat PDF),The President’s Committee for People with Intellectual Disabilities, 9/19/2013
Medicaid Overhaul Must Focus on Long-Term Care, American Enterprise Institute, 4/12/2013
Chapter 39. –Mentally Ill, Incapacitated and Dependent Persons; Social Welfare, Kansas Statutes Annotated § 39-1801-1810, 1/1/2013
Continuity of Care in KanCare (Adobe Acrobat PDF),KanCare, 1/1/2013
About Us. General Frequently Asked Questions., KanCare, 1/1/2013
Guiding Principles: Successfully Enrolling People with Disabilities in Managed Care Plans, National Council on Disability, 1/1/2012
Structuring New Service Delivery Models for Individuals with Intellectual and Developmental Disabilities, Center for Health Care Strategies, Inc, 2/1/2013
Medicaid Managed Long Term Services and Support (MLTSS),, 5/1/2013
The Affordable Care Act and the I/DD Community: An Overview of the Law and Advocacy Priorities Going Forward (Adobe Acrobat PDF),Autistic Self Advocacy Network, 9/1/2013
People with Disabilities and Medicaid Managed Care: Key Issues to Consider, Kaiser Commission on Medicaid and the Uninsured, 2/1/2012
Analysis and Recommendations for the Implementation of Managed Care in Medicaid and Medicare Programs for People with Disabilities, National Council on Disability, 1/1/2012
Transitioning Long Term Services and Supports Providers Into Managed Care Programs (Adobe Acrobat PDF),Centers for Medicare & Medicaid Services, 5/1/2013
Systems of Care for Individuals with Intellectual and Developmental Disabilities: A Survey of States (Adobe Acrobat PDF),Center for Health Care Strategies, Inc, 9/1/2012
Trends and Challenges in Publicly-Financed Care for Individuals with Intellectual and Developmental Disabilities (Adobe Acrobat PDF),Center for Health Care Strategies, Inc, 9/1/2012
Examining Medicaid Managed Long-Term Service and Support Programs: Key Issues To Consider (Adobe Acrobat PDF),Kaiser Commission on Medicaid and the Uninsured, 10/1/2011
Ready, Set, Go! The Readiness Review Process for Care Coordination and Provider Network Adequacy in Five States (Adobe Acrobat PDF),AARP Public Policy Institute, 12/1/2013
Medicaid Managed Care: Costs, Access, and Quality Care, Robert Wood Johnson Foundation, 9/1/2012
Medicaid Managed Care for People with Disabilities: Policy and Implementation Considerations for State and Federal Policymakers, National Council on Disability, 3/18/2013
Medicaid Managed Long Term Services and Supports for People with Intellectual and Developmental Disabilities; Part 1 (Adobe Acrobat PDF),Kansas Department of Aging and Disability Services, 9/18/2013
Medicaid Managed Long Term Services and Supports for People with Intellectual and Developmental Disabilities; Part 2 (Adobe Acrobat PDF),Kansas Department of Aging and Disability Services, 9/18/2013
The Case for Medicaid Self-Direction: A White Paper on Research, Practice, and Policy Opportunities (Adobe Acrobat PDF),National Council on Disability, 5/22/2013
The Work Option for Individuals with Intellectual Disabilities: The Obstacles and the Possibilities (Adobe Acrobat PDF),University Legal Services, 11/1/2012


Ari Ne’eman

Employment and family support services should be included in Medicaid managed care programs, James Bart, ombudsman, KanCare (Kansas Medicaid program), stated at a December 18 Alliance briefing, Intellectual and Developmental Disabilities in the ACA Era.


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