Medicaid Legislative Agenda for the 112th Congress (2011-2012)

Medicaid is the lifeline for most people with significant disabilities.  The Medicaid program is overwhelmingly the largest funding source of long-term individual and family supports in the federal/state mental retardation/developmental disabilities system, and the primary source of health care payment for most of our constituents.  For the increasing number of individuals with disabilities living with aging parents, Medicaid will be the solution to meet their needs. 

The state of the national economy has already placed undue pressure on the states.  Many states have scaled back eligibility, frozen already inadequate reimbursement rates, and reduced services, with devastating impact on people with disabilities, their families, and their communities.  Today, many of our constituents cannot get health care and long-term services.  Further shifting responsibility for Medicaid to the states and increasing flexibility that allows states to reduce eligibility and benefits is placing many of our constituents and our nation’s health, therapeutic, and long-term care systems for vulnerable populations at enormous risk.  Medicaid should evolve instead into a national program. 

Medicaid is a powerful driver of economic activity at the state and local levels.  Research has shown temporary increases in the federal medical assistance percentages (FMAP) to be an effective tool for economic stimulus because Medicaid generates jobs.  When Medicaid service provider agencies are able to retain staff positions, unemployment is reduced and money gets put into the hands of individuals who will spend it.  In addition, Medicaid reduces health care costs by allowing people with disabilities to maintain their Medicaid coverage and not utilize costly and unwanted institutionalization.

Due to the severe economic downturn facing an overwhelming majority of states across our nation, most states are cutting Medicaid spending. Such cuts will have a dramatic impact on our constituents who depend on this program for critical health and long term services.  Decreased Medicaid budgets also mean that hundreds of thousands of people with developmental disabilities will remain on waiting lists across the country. Equally disconcerting is the loss of many qualified staff when jobs are eliminated due to Medicaid cuts.

Numerous improvements were made to the Medicaid acute and long term services and supports programs through enactment of the Affordable Care Act of 2010 (ACA).  These program improvements must be properly implemented at the federal and state levels in order to work most effectively for people with disabilities.  States must be provided with clear guidance on how to effectively use the flexibility and options created by the ACA.  Congress must ensure continued access to the ACA provisions.

In order to accomplish true Medicaid reform, the 112th Congress must:

Overall Structure

  • Maintain the individual entitlement to a full range of Medicaid health and long term supports and services for all eligible children and adults with disabilities;

  • Oppose Medicaid deconstruction or any moves to provide states with flexibility that eliminates basic protections for eligible individuals with developmental disabilities or the imposition of entitlement caps, Medicaid block grants, per capita caps, allocations, allotments, or other mechanisms that cause reductions in eligibility, services, or protections for our constituents.

Responding to State Budget Crises

  • Extend the temporary increase in the federal share of Medicaid spending (FMAP) (set to expire on 6/30/11) to address the economic crises facing states across the country and ensure that states maintain their level of effort.


  • Encourage state implementation of the option in state Medicaid plans for families of children with disabilities to buy into Medicaid if private health insurance is not available or does not meet their needs;

  • Encourage full implementation by states of options to establish Medicaid buy-in programs for people with disabilities who work;

  • Ensure that Medicaid eligibility rules and processes do not place undue burdens on applicants and beneficiaries who do not have access to birth or citizenship documentation.


  • Prohibit issuance or implementation of any regulations that limit or eliminate services;

  • Ensure that Medicaid-eligible children with disabilities continue to obtain health-related services during the school day under the student’s Individualized Education Program and receive any necessary transportation to those services;

  • Improve protections for people with disabilities who are dual (Medicaid and Medicare) eligibles   to ensure that they have timely and affordable access to all medically necessary medications under Medicare prescription drug plans;

  • Protect the entitlement to the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program and support sanctions against states that fail to properly implement it;

  • Require the Centers for Medicare and Medicaid Services (CMS) to issue guidance to states that will result in expanded coverage of appropriate assistive technology for Medicaid beneficiaries;

  • Ensure Medicaid reimbursement for a 30-day emergency supply of medication in anticipation of potential disasters, epidemics, or other emergencies;

  • Support the continuation and expansion to all states of states’ current ability to provide habilitation services under the Medicaid rehabilitation option and ensure that our constituents have supports, services, and training available to teach them to achieve self-determination and increase independence, productivity, and full citizenship through greater mental, physical, and social development.

Home and Community-Based Services (HCBS)

  • Change Medicaid policy to mandate home-and community-based services but to require a waiver to provide new services in large institutions;

  • Change Medicaid law so that consumers and families can choose to exercise control over resources to better meet their individual needs;

  • Ensure the full implementation of the Community First Choice Option which allows states to provide comprehensive community-based services with an incentive of a six-percent increase in the federal matching rate for such services; 

  • Ensure full implementation of the amended Section 1915(i) Medicaid state plan option for home and community services that allows states to serve people who do not yet need an institutional level of care;

  • Ensure full implementation of all other long term services provisions and expansions included in the Affordable Care Act to meet the needs of people with disabilities, including the state rebalancing provisions, expansion of the Money Follows the Person demonstration program, expansion of the Aging and Disability Resource Centers, and the spousal impoverishment provisions; Reject efforts to block ACA implementation via the appropriations process;

  • Revise Medicaid law to require states to serve all federally Medicaid eligible people with developmental disabilities and not a subset of the population under HCBS;

  • Ensure that people with disabilities using HCBS waiver or option services may live in settings of their choice;

  • Enact a requirement that states provide community attendant services and supports;

  • Reform current Medicaid Home and Community Based Services waiver (HCBS) and State Medicaid plan Section 1915(i) option to promote competitive, integrated employment; and

  • Ensure that enhanced habilitation services, including “prevocational” services (which teach such concepts as attendance, task completion, problem solving, and safety) are provided on the basis of identified individual need and reject any efforts to impose arbitrary time limits on the provision of such services.

Removal of Institutional Bias

  • Address unmet needs in the community by removing the institutional bias for Medicaid long term services by amending the Medicaid formula for cost-sharing with the states to provide a greater fiscal incentive for supporting individuals in the community rather than in institutions;

  • Decouple eligibility for the home and community-based waiver from eligibility for institutional services;


  • Improve Medicaid so that beneficiaries and families are not disadvantaged by moving from one state to another.

Reimbursement Rates 

  • Establish an increased FMAP for home and community-based services (HCBS);

  • Ensure that states set and update reimbursement rates annually so that they reflect the actual cost of providing Medicaid funded services and supports, particularly adequate wages and benefits for direct support workers;

  • Ensure that states increase, and annually update, reimbursement rates and fees for health practitioners and clinical specialists to reflect the cost of providing services.


  • Protect and improve the ability of families and individuals to establish trusts to benefit Medicaid eligible beneficiaries and ensure the integrity of pooled trusts which serve such families and individuals;

  • Establish an incentive program of increased Federal Medical Assistance Percentage (FMAP) for states that commit to eliminating the wage differential between workers in community services and workers in government-run Medicaid services by increasing the wages and benefits of the community workers;

  • Require that Medicaid managed care programs provide primary and acute care based on individual needs and informed choices as determined by the individuals and their doctors and include appropriate consumer protections and enforceable quality standards;

  • Reject the placement of Medicaid long term services and supports within a managed care system;

  • Maintain the prohibition against the mandatory placement of children with disabilities into Medicaid managed care without an approved waiver; and

  • Ensure effective quality assurance mechanisms, oversight, and enforcement of state governments’ implementation of federally supported community services and supports and the intermediate care facilities program for people with “mental retardation and related conditions” (ICF/MR), including the involvement of people with developmental disabilities and their families in statewide quality assurance systems.

Legislative Agenda Partners

We are national organizations that serve and advocate for people with intellectual, developmental, and other disabilities. We work together to shape, expand, and protect a strong federal role that provides vital benefits, services and supports and assures civil rights for our constituency.