Meeting with Center for Budget and Policy Priorities

We know how important Medicaid policies are for you. Here in D.C. we are doing our part to continually insert ourselves into these discussions on behalf of individuals with disabilities, their families and those that provide care and services. Recently, UCP attended a talk with the Center for Budget and Policy Priorities (CBPP) regarding the threat posed to Medicaid in the current political environment.

Here is a summary of the meeting, along with key takeaways. The primary topic of discussion from CBPP that posed the biggest threat was the sectioning of Medicaid funding to states, primarily in the form of Per Capita Caps and Block Grants.  Amongst the various alterations in the budgetary sector of Medicaid, are Block Grants and Per Capita Cap, both of which section off the funding to states. While both have their varying adverse factors, the common ground lies in the fact that the implementation of such monetary action depletes the protection that the disability community receives through Medicaid.

We appreciate the varying level of background and impact of this issue for our network, but we wanted to provide this as a resource to use as you see fit.  If you have additional questions please reach out.

What is the difference between a Block Grant and a Per Capita Cap?

  • Block Grants are given to the state in one lump sum
    • States allocate where the money will go
    • States also have to make up the difference after federally allotted money is used
  • Per Capita Caps are fixed
    • Capped funds from the governments issued to states per beneficiary of Medicaid
    • There is an anticipated larger gap between funding and spending due to the increase of technological advancement

What is the problem at hand?

Block grants are one of the least accountable of measures to “reform” Medicaid.  It has an inability to adjust to varying economic conditions; it can be cut easily and it’s bias towards, or against, certain beneficiary groups puts it at a position of being severely harmful to the disability community.

Per Capita Caps have been a part of the Republican Task Force in regards to Medicaid Reform. Seen as the lesser of two evils, the attention surrounding this initiative has given it undue positive light in attempt to downplay the negative repercussions that the implementation of such will have on those with disabilities who benefit from Medicaid.

If implemented, Per Capita Caps will limit the budgetary liberty per beneficiary. Through its supposed flexible nature, the fluctuation of this cap will cause altercation amongst the beneficiary groups and the state governments. Seen as bipartisan, and a better alternative to Block Grants, Per Capita Caps inevitably moved conversation away from the stride that Medicaid innovation has made.

In terms of Republican Task Force strategy, many Democratic Governors and Senators have signed on for Per Capita Caps, seeing, again, that it may be considered to be the lesser of two evils. This supposed bipartisan act will decrease the amount of funding per state per beneficiary, therefore increasing the cost as time goes through due to a variety of external factors, i.e., disease, pharmaceutical drug innovation, accessible technology, as these costs will not be picked up by Per Capita Cap.

What does this mean for the disability community?

As mentioned, it is evident that the disability population under Medicaid will not be protected in the event that Per Capita Caps are implemented, due to the fact that there have been vast strides in the innovative technology surrounding assistance for those who have disabilities. As per the act, these costs will not be picked up by Per Capita Cap, meaning that any new innovation will be subject to budgetary restrictions and will only be available with additional cost.  

This is all concerning and individuals with disabilities may no longer be entitled to health care or to long term services and supports under a block grant.  Combined with a fixed amount of severely reduced funding, states could be forced to cut eligibility, benefits, and provider payments. People with disabilities stand to lose access to physicians, medications, therapies, medical equipment, and many other crucial products and services. Worse, states could go back to institutionalizing people with disabilities to save money since they would no longer have to meet the quality standards currently imposed by the Medicaid program for nursing homes or community based services.  

A per capita cap would make this problem [of the struggle that patients go through to get the necessary budgets to have accessible care] worse by limiting the federal role in Medicaid and shifting more of the program’s costs onto states, providers, and patients. Cuts to provider payments, elimination of benefits and reductions in access to care are virtually unavoidable under this type of proposal.

It seems that if Medicaid budget cuts do go underway, that many of the services that allow for individuals with disabilities to have liberties, will disintegrate, therefore forcing certain individuals to refer back to institutions to obtain services that were otherwise integrated within the community. In a way, this repercussion contradicts the Olmstead Act from 1999, which worked to remove economic influences from forcing individuals into institutions. By cutting Medicaid budget, and by proxy, its services, individuals that work in the community and live at home face the threat of losing a large portion of their own budget on medical care, forcing them out of their homes and back into institutions.

What can we do next?

We continue to watch and monitor the development of programs around Medicaid Block Grants and Per Capita Caps.  We need to look at both of these as threats to the current Medicaid system and not as one being a solution that is be is imperative that there should be a conversation shift in the way that the media portrays this endeavor. Instead of looking at Per Capita Cap as the lesser of two evils, it is important to take into account what this means specifically for the disability community and what this means for the future of technology and pharmaceutical advancements. State officials should be informed of the true bearing of cost that they will be burdened with, and they should be prepared to hear of the lack of protection that it will provide to beneficiaries.

Keeping everyone who is affected by the funding changes in Medicaid updated is imperative, seeing as it is one of the issues that will affect life on a day to day basis for individuals with disabilities. We wish to drive programs and legislations that will allow for a higher standard of health care. We not only wish to expand upon the knowledge that our affiliates hold on Medicaid and other health care issues, but also wish to understand how each individual is impacted by these issues and work towards significant policy change.

The Latest Legislative Update from UCP

As October comes to an end we wanted to provide you with a quick wrap up of what’s happened, what is on the horizon and why it matters for you.iStock_000012685951XSmall

Let’s recap where we are with funding for the federal government: Early in the month Congress was faced with an expiring budget and the threat of a government shutdown. In quick action they voted on and passed a Continuing Resolution (CR) – this extends the current budget through December. The CR really serves as a patch to provide Congress with a bit more time to put together and vote on a longer-term budget. Conversations are currently underway to have a budget on the table that may possibly even extend through November 2016. We are constantly watching the discussions to see how disability programs funded through National Institutes of Health, Administration for Community Living, and Centers for Disease Control and Prevention are shaping up. These are the programs that provide services and supports necessary to live independent, high quality lives and have the most impact on our UCP universe. On the horizon is the upcoming debate of reauthorizing the debt ceiling. During all of these important discussions, Speaker of the House John Boehner announced that he is resigning and the search for his replacement is currently ongoing. As Congress continues to work through these issues we will continue to monitor and keep you posted.

In addition to the federal funding issues, there have been a few policy developments we want to update you on:

Home Care Rule

First, the Supreme Court issued a statement that it would not revisit the Department of Labor’s rule focused on compensation and coverage of personal care assistants, referred to as the Home Care Rule.This new rule, set to go into effect by the end of the year, would extend minimum wage and overtime protections to home-care workers. The new rules do not apply to home-care workers who are hired directly by patients or their families, but only to those who are employed through businesses, including nonprofit organizations such as United Cerebral Palsy. At UCP, we want to ensure the best outcome for both the workers who provide in-home care as well as those who depend on receiving it. With the rule in place, our focus is now to work with others to ensure that Medicaid state agencies provide reimbursement rates that enable caregivers to continue to provide the quality critical support people with disabilities need to live independently. Read our latest update here.

As implementation of the rule moves forward, we will provide you with information and resources on how to ensure these services are covered.

Reimbursement for Complex Rehab Technologies

The process for which the Centers for Medicare and Medicaid (CMS) reimburses tools and technologies used by the disability community through a competitive bidding program and over the years, we have updated you on the potential harms that competitive bidding has when it comes to accessing wheelchairs and other equipment classified as complex rehabilitation technology. There are two pieces of legislation right now that are attempting to address this harms. First, is a larger piece of legislation called “The Ensuring Access to Complex Rehabilitation Technology Act” of 2015 that seeks to solve the long-standing reimbursement problem by creating a new benefit category for complex rehabilitation technology. We are working with others here in DC to support this legislation and determine the best path forward to insure that those that need and utilize these technologies can have access to them.

Another more pressing issue as it relates to reimbursement of wheelchairs is a recent decision made by CMS to limit payment for complex wheelchair accessories. This is concerning as accessories is being defined as all customizable and individually configured components that are integral to a functioning char. This new decision will go into effect January 2016.

In an effort to reverse this decision, Congressman Zeldin of New York has introduced legislation (H.R. 3229) which would prevent the proposed rates from going into effect.  We sent an alert asking for you to call your Member of Congress and tell them to support this legislation. View our alert here and Call your member!

We also want to hear from you about why complex rehabilitation technology is important to you –what the impact would be if these new rates went into effect and limited your ability to afford and access this equipment? Send us your story so we can share it with decision makers!  

The Pope, A New Speaker and a Budget: What’s Going on in Washington Right Now

It has been an exciting few weeks here in Washington, D.C.  It started with the city in celebration mode to host the pope and ended with the Speaker of the House resigning and the House and Senate passing a short-term continuing resolution (CR) that avoided a government shutdown.iStock_000012685951XSmall

While the CR is only short-term it was necessary as Congress has yet to pass any of the 12 annual appropriations bills and send them to the president’s desk.  As is the CR will continue to fund the government at fiscal year 2015 levels through December 11, 2015.

The current CR means that funding for programs and agencies important to the disability community, including the National Institutes of Health, Centers for Medicare and Medicaid and Centers for Disease Control and Prevention remain intact.

However, the looming December deadline still presents many reasons for us to remain watchful.  In addition to carving out a larger and longer-term budget agreement that must address across the board cuts and extend past the 2016 elections, Congress must also address hitting the federal debt ceiling.   

As for the new speaker of the house, it is likely to be Majority Leader Kevin McCarthy (R-CA).  However, many members are running for the other key positions in the leadership.  What is clear is that no matter who is nominated, they will surely have a full plate to deal with.

Here at UCP, we will continue to monitor the discussions and update you as the process proceeds.





Kaelan Richards: 202-973-7175,


Washington, DC (January 2, 2012) – United Cerebral Palsy (UCP) issued the following statement in response to the passage by Congress of legislation to avert the so-called ‘fiscal cliff’ of tax increases and spending cuts.

“We applaud Congress’s action to prevent harmful tax increases and cuts to vital services and supports for millions of Americans. The deal passed by Congress protects Social Security benefits and Medicaid— but most importantly, the individuals and their families who depend on these safety net programs, and particularly those living with disabilities.

“However, we are very disappointed that the CLASS Act, which offered a framework for funding long-term services and supports, was repealed in the ‘fiscal cliff’ legislation. We are hopeful that the replacement Commission that was created in its place will be successful in helping our country to address these critical issues.

“United Cerebral Palsy urges Congress and President Obama to continue to work together to ensure that the programs and services that help so many Americans with disabilities and their families are protected in our ongoing budget debates.”

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About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit