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!  

How Well Does Your State Serve People with Disabilities?

Arizona, Maryland, Missouri, New York & Hawaii Top 2015 Case for Inclusion Rankings

 

United Cerebral Palsy (UCP) released the 2015 Case for Inclusion today, an annual report and interactive website used to track state-by-state community living standards for Americans living with intellectual and developmental disabilities (ID/DD).

To download and read the entire Case for Inclusion report or explore the data, visit cfi.ucp.org.

TCase for Inclusionhe annual Case for Inclusion examines data and outcomes for all 50 States and the District of Columbia (DC), ranking each on a set of key indicators. These indicators include how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. The report is a product of a comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

In addition to rankings, the report digs deeper into two critical issues facing people with disabilities and their families: waiting lists for services and support and transitioning from high school into an adult life in the community.

Since 2006, the rankings have enabled families, advocates, the media and policymakers to measure each state’s progress or lack of improvement and gain insight into how the highest-ranking states are achieving their success. An interactive website allows visitors to compare and contrast results among selected states and dig deeper into the data.

The report puts each State’s progress into a national context to help advocates and policymakers in their missions to improve life for people with disabilities and their families.

  • Advocates should use this information to educate other advocates, providers, families and individuals, policymakers and state administrations on areas needing improvement. The data can support policy reforms and frame debates about resource allocation. Advocates can also use the information to prioritize those areas that need immediate attention and support funding to maintain high quality outcomes, eliminate waiting lists and close large institutions.
  • Elected officials should use this report as a guide on which issues and States need time and attention and, possibly, more resources or more inclusive policies.
  • Federal and State administrations should use this report to put their work and accomplishments in context and to chart a course for the next focus area in the quest for continuous improvement and improved quality of life.

Stephen Bennett“Ultimately, the goal of all of this is to promote inclusion and enhance the quality of life for all Americans,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “UCP is committed to shining a light on how well states are actually serving people with disabilities and, by extension, their families and communities. Also, we want to provide the proper national context for this data so that we can truly use it to drive progress.”

 

How is your state doing? 

 

  1. All States still have room for improvement, but some States have consistently remained at the bottom since 2007, including Arkansas (#49), Illinois (#47), Mississippi (#51) and Texas (#50) primarily due to the small portion of people and resources dedicated to those in small or home-like settings in these four states. Mississippi and Texas also do not participate in NCI.
  1. 32 States, down from 38, meet the 80/80 Home and Community Standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for home (less than 7 residents per setting) and community support. Those that do not meet the 80/80 standard are Arkansas, Delaware, Florida, Illinois, Indiana, Iowa, Kentucky, Louisiana, Mississippi, New Jersey, North Carolina, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Texas, Utah and Virginia.
  1. As of 2013, 14 States report having no state institutions to seclude those with ID/DD, including Alabama, Alaska, Hawaii, Indiana, Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and Washington, D.C. Another 10 States have only one institution each (Arizona, Delaware, Idaho, Montana, Nebraska, Nevada, North Dakota, South Dakota, Utah and Wyoming). Since 1960, 220 of 354 state institutions have been closed (5 more in the past year alone), and 13 more are projected to close by 2016 in California, Massachusetts, New Jersey (3), New York (2), Oklahoma (2), Tennessee (2) and Virginia (2).
  2. For people with disabilities life should be without limits26 States, up from 18, now report meeting the 80 percent Home-Like Setting Standard, which means that at least 80 percent of all individuals with ID/DD are served in settings such as their own home, a family home, family foster care or small group settings like shared apartments with fewer than four residents. The U.S. average for this standard is 79 percent. Just eight States meet a top-performing 90 percent Home-like Setting Standard: Arizona, California, Colorado, D.C., Hawaii, Nevada, New Hampshire, and Vermont.
  1. Ten States, up from seven last year, report at least 10 percent of individuals using self-directed services, according to the National Core Indicators survey in 29 States. These States include Arkansas, Connecticut, Florida, Hawaii, Illinois, Indiana, Kansas, Kentucky, Utah and Virginia.
  1. 42 States, up from 39 last year, participate in the National Core Indicators (NCI) survey, a comprehensive quality-assurance program that includes standard measurements to assess outcomes of services. A total of 29 States, a 50% increase from last year, reported data outcomes in 2014.
  1. Only 14 States report that they are supporting a large share of families through family support (at least 200 families per 100,000 of population). These support services provide assistance to families that are caring for children with disabilities at home, which helps keep families together, and people with disabilities living in a community setting. These family-focused state programs were in Arizona, California, Delaware, Louisiana, Minnesota, Montana, New Hampshire, New Mexico, New York, South Carolina, South Dakota, Vermont, Wisconsin, and Wyoming. Alabama and Pennsylvania reported that they were providing higher levels of family support in last year’s ranking.
  1. Just 8 States, down from 10 last year, report having at least 33 percent of individuals with ID/DD working in competitive employment. These States include Connecticut, Maryland, New Hampshire (newly added), New Mexico, Oklahoma, Vermont, Washington, and West Virginia (newly added). Louisiana, Nebraska, Oregon and Virginia reported that they met this threshold in last year’s ranking, but reported a decrease in competitive employment this year.
  1. 14 States report successfully placing at least 60 percent of individuals in vocational rehabilitation in jobs, with fifteen States reporting the average number of hours worked for those individuals placed being at least 25 hours. Three States report at least half of those served got a job within one year. Only California met the standard on all three success measures this year compared to last year’s ranking, when Nebraska and South Dakota were the only two states to report meeting all three thresholds.
  1. Waiting lists for residential and community services are high and show the unmet need. More than 322,000 people, 5,000 more than last year, are on a waiting list for Home and Community-Based Services. This requires a daunting 44 percent increase in States’ HCBS programs. 16 States, a decrease from 22 last year, report no waiting list or a small waiting list (requiring less than 10 percent program growth).

2013_donation_overlay_buttonYour support makes The Case for Inclusion possible each year. Make a gift today to help UCP continue to fulfill its mission of a Life Without Limits for people with disabilities and their families by providing advocacy, support and services. 

UCP Releases Case for Inclusion Rankings and Report

Arizona, Maryland, Missouri, New York & Hawaii Top 2015 List

 

Washington, D.C. (July 16, 2014) – United Cerebral Palsy (UCP) released the 2015 Case for Inclusion today, an annual report and interactive website used to track state-by-state community living standards for Americans living with intellectual and developmental disabilities (ID/DD).

The Case for Inclusion examines data and outcomes for all 50 states and the District of Columbia (DC), ranking each on a set of key indicators, including how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. By taking these factors into account, UCP is able to publish this comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

In addition to rankings, the report digs deeper into two critical issues facing people with disabilities and their families: waiting lists for services and support and transitioning from high school into an adult life in the community. Two case studies examine how states are approaching those issues.

Since 2006, the rankings have enabled families, advocates, the media and policymakers to measure each state’s progress or lack of improvement and gain insight into how the highest-ranking states are achieving their success. To enhance the usability of the report, UCP publishes tables of the data from which the report was compiled on an interactive website where visitors can compare and contrast results among selected states.

“Ultimately, the goal of all of this is to promote inclusion and enhance the quality of life for all Americans,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “UCP is committed to shining a light on how well states are actually serving people with disabilities and, by extension, their families and communities. Also, we want to provide the proper national context for this data so that we can truly use it to drive progress.”

To download and read the entire Case for Inclusion report or explore the data tables, visit cfi.ucp.org.

 

Significant Takeaways from the 2015 Ranking

Promoting Independence

  1. All States still have room for improvement, but some States have consistently remained at the bottom since 2007, including Arkansas (#49), Illinois (#47), Mississippi (#51) and Texas (#50) primarily due to the small portion of people and resources dedicated to those in small or home-like settings in these four states. Mississippi and Texas also do not participate in NCI.
  1. 32 States, down from 38, meet the 80/80 Home and Community Standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for home (less than 7 residents per setting) and community support. Those that do not meet the 80/80 standard are Arkansas, Delaware, Florida, Illinois, Indiana, Iowa, Kentucky, Louisiana, Mississippi, New Jersey, North Carolina, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Texas, Utah and Virginia.
  1. As of 2013, 14 States report having no state institutions to seclude those with ID/DD, including Alabama, Alaska, Hawaii, Indiana, Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, West Virginia and Washington, D.C. Another 10 States have only one institution each (Arizona, Delaware, Idaho, Montana, Nebraska, Nevada, North Dakota, South Dakota, Utah and Wyoming). Since 1960, 220 of 354 state institutions have been closed (5 more in the past year alone), according to the University of Minnesota’s Research and Training Center on Community Living. Another 13 more are projected to close by 2016 in California, Massachusetts, New Jersey (3), New York (2), Oklahoma (2), Tennessee (2) and Virginia (2)
  1. 26 States, up from 18, now report meeting the 80 percent Home-Like Setting Standard, which means that at least 80 percent of all individuals with ID/DD are served in settings such as their own home, a family home, family foster care or small group settings like shared apartments with fewer than four residents. The U.S. average for this standard is 79 percent. Just eight States meet a top-performing 90 percent Home-like Setting Standard: Arizona, California, Colorado, D.C., Hawaii, Nevada, New Hampshire, and Vermont.
  1. Ten States, up from seven last year, report at least 10 percent of individuals using self-directed services, according to the National Core Indicators survey in 29 States. These States include Arkansas, Connecticut, Florida, Hawaii, Illinois, Indiana, Kansas, Kentucky, Utah and Virginia.

Tracking Health, Safety and Quality of Life

  1. 42 States, up from 39 last year, participate in the National Core Indicators (NCI) survey, a comprehensive quality-assurance program that includes standard measurements to assess outcomes of services. A total of 29 States, a 50% increase from last year, reported data outcomes in 2014.

Keeping Families Together

  1. Only 14 States report that they are supporting a large share of families through family support (at least 200 families per 100,000 of population). These support services provide assistance to families that are caring for children with disabilities at home, which helps keep families together, and people with disabilities living in a community setting. These family-focused state programs were in Arizona, California, Delaware, Louisiana, Minnesota, Montana, New Hampshire, New Mexico, New York, South Carolina, South Dakota, Vermont, Wisconsin, and Wyoming. Alabama and Pennsylvania reported that they were providing higher levels of family support in last year’s ranking.

Promoting Productivity

  1. Just 8 States, down from 10 last year, report having at least 33 percent of individuals with ID/DD working in competitive employment. These States include Connecticut, Maryland, New Hampshire (newly added), New Mexico, Oklahoma, Vermont, Washington, and West Virginia (newly added). Louisiana, Nebraska, Oregon and Virginia reported that they met this threshold in last year’s ranking, but reported a decrease in competitive employment this year.
  1. 14 States report successfully placing at least 60 percent of individuals in vocational rehabilitation in jobs, with fifteen States reporting the average number of hours worked for those individuals placed being at least 25 hours and three States reporting at least half of those served getting a job within one year. Only California met the standard on all three success measures this year compared to last year’s ranking, when Nebraska and South Dakota were the only two states to report meeting all three thresholds.

Serving Those in Need

  1. Waiting lists for residential and community services are high and show the unmet need. More than 322,000 people, 5,000 more than last year, are on a waiting list for Home and Community-Based Services. This requires a daunting 44 percent increase in States’ HCBS programs. 16 States, a decrease from 22 last year, report no waiting list or a small waiting list (requiring less than 10 percent program growth).

Advocate Explains Basics of the ABLE Act

Guest blogger Melissa theSeed is a mother, wife, advocate & blogger with two children with medical needs. She advocates for social and civil justice for people with disabilities through her blog and online communities. She is co-founder of a NY-based nonprofit called “Forward RISE” that is committed to bettering communities and improving disability awareness through education and social experiences.

You can contact her via email at info@forwardrise.org or call Forward RISE at 631-291-9328. Check out her blog at theseed9811.blogspot.com or her website at Forwardrise.org. And, she is on Facebook. Feel free to contact her with any comments or questions.

ABLE ActThe Achieving a Better Life Experience Act (ABLE) was finally signed into law by the President on December 19, 2014. It is now up to each State to implement the new law which would allow for tax-free savings accounts to be built for a population that has historically been forced to live in poverty. Up until now, in order to be eligible for SSI and Medicaid, a person could not have more than $2,000 in cash and property ($3,000 for couples) or make more than $700 monthly (!) in order to be eligible for Medicaid or SSI.

This means they can’t save money for things that Medicaid and SSI don’t cover like education, housing, a job coach or transportation. While the rest of society is encouraged to save for emergencies, unforeseen expenses and rainy days, people with disabilities – who have naturally higher expenses and higher medical needs – were forced to scrape pennies and do without due to archaic laws and discriminatory notions held by society in general.

What Is the ABLE Act?

 

Once enacted by the States, this bi-partisan piece of legislation will give people with disabilities and their families freedoms and security never before experienced. It amends the IRS code of 1986 to allow savings accounts to be set up for individuals with disabilities much like the college tuition accounts known as “529 accounts” that have been around since 1996. The Treasury Department is currently writing all of the regulations. There will then be a period of time where public comments on the proposed rules will be allowed. Before the end of 2015, every State is expected to establish and operate an ABLE program.

  • Allows savings accounts to be set up for individuals with disabilities
  • Recipients do not have to count funds as income
  • Recipients do not have to pay taxes on funds if they are used for disability-related expenses

How does it work?

In a nutshell, once enacted by a State, an ABLE savings account can be opened up by an individual with a disability or by someone else on their behalf. Up to $14,000 may be deposited yearly untaxed, with that amount to be increased as inflation rises. If an account surpasses $100,000, the owner of the account will no longer be eligible for SSI but would not be in danger of losing Medicaid. When a person dies, Medicaid will be reimbursed first from the account before it is dispersed to the person’s estate.

  • Can be opened up by an individual with a disability or by someone else on their behalf
  • Up to $14,000 may be deposited yearly
  • Up to $100,000 can be accrued without affecting SSI

Who is eligible?

Individuals with a disability wanting to establish an ABLE account must have acquired their disability before turning 26. If an individual is over the age of 26 but their disability onset was prior to turning 26, they will be still be able to establish an ABLE account. Individuals who meet this requirement and receive SSI or SSDI are automatically eligible to establish an account. Individuals who do not receive these services may still be eligible if they meet SSI criteria regarding who is eligible. The Treasury Department will further explain standards of proof in the regulations they are currently completing.

  • Onset of disability must have occurred prior to turning 26 years of age
  • Must meet SSI eligibility criteria

What can the funds be used for?

While the details are still being finalized, it is anticipated that the funds will be allowed to cover any disability-related expenses, including:

  • Education
  • Housing
  • Transportation
  • Employment training and support
  • Assistive technology and personal support services
  • Health, prevention and wellness
  • Financial management and administrative services
  • Legal fees
  • Funeral and burial expenses

This is a great step forward in the right direction for this community. Let’s hope the regulations are completed sooner rather than later and that the States take quick action in adopting them so that individuals and families can begin saving for a better life! Equality for All, ALWAYS!

UCP ON NEW DEPARTMENT OF LABOR RULE

FOR IMMEDIATE RELEASE

CONTACT: Kaelan Richards: 202-973-7175, krichards@ucp.org

UCP ON NEW DEPARTMENT OF LABOR RULE

Washington, DC (September 20, 2013) – United Cerebral Palsy (UCP) released the following statement in response to a final rule from the U.S. Department of Labor aimed at tightening the Fair Labor Standards Act by significantly narrowing the “companionship exemption” to give nationwide minimum wage and overtime protections for in-home, direct support caregivers.

“While we understand that the new rule from the Department of Labor is intended to ensure that direct support caregivers are being compensated fairly for their work, there are serious potential consequences to these changes for individuals with disabilities.  Many of the services that these caregivers provide are reimbursed by Medicaid—which in many states does not allow for overtime.  This new rule may limit the services and supports that can be provided to individuals with disabilities living in the community, and ultimately result in more people with disabilities winding up in costly institutions,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “To avoid this unintended outcome, it is imperative that state Medicaid agencies take advantage of the delayed implementation of this rule to set reimbursement rates that will enable organizations like UCP to continue the in-home, community services and supports that people with disabilities need.”

# # #

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 www.ucp.org.

UCP RELEASES NEW REPORT ON STATES SERVING AMERICANS WITH DISABILITIES

 

FOR IMMEDIATE RELEASE

CONTACT:

Kaelan Richards: 202-973-7175, krichards@ucp.org

 

UCP RELEASES NEW REPORT ON STATES SERVING AMERICANS WITH DISABILITIES

New format highlights states’ successes with managed care and employment initiatives

Washington, DC (May 2, 2013) – United Cerebral Palsy (UCP) released the 2013 Case for Inclusion today, an annual report that tracks the progress of community living standards for Americans living with intellectual and developmental disabilities (ID/DD).

The 2013 report, in addition to data from all previous reports since 2006, is available on UCP’s website using a robust new web module and design at http://www.ucp.org/the-case-for-inclusion/2013/.

Each state and the District of Columbia (DC) is analyzed and ranked based on five key outcome areas: promoting independence, tracking quality and safety, keeping families together, promoting productivity, and reaching those in need. Since 2006, these rankings enable families, advocates, the media and policymakers to fully understand each state’s progress or lack of improvement, and help to protect programs and services against unwise funding cuts, as well as guide future reforms to promote inclusion and enhance the quality of life for these, and ultimately all, Americans.

This year’s report highlights the progress that has been made, including:

·      38 states now meet the 80/80 Community standard, a dramatic increase from just 14 states in the 2007 report.

·      As of 2011, 13 states have no state institutions to seclude those with ID/DD. 10 states have only one institution each.

·      Since 1960, 209 of 354 state institutions have been closed, leaving just 149 remaining.

·      21 states now meet the 80% Home-like Setting standard (80% in settings with 1-3 residents).  This is up from just 17 states in the 2007 report.

·      34 states participate in the National Core Indicators, an increase from 24 in the 2007 report. 

·      15 states were supporting a large share of families through family support, up from just 10 states in the 2007 report.

The report also identifies problems, such as:

·      All states still have room for improvement, but some states have consistently remained at the bottom since 2007, Arkansas (#50), Illinois (#48), Mississippi (#51) and Texas (#49).

·      Just ten states have at least one-third (33%) of individuals in competitive employment. This is a downturn from 2007, when 17 states met this standard.

·      Waiting lists for residential and community services are high and have grown from 138,000 people in 2007 to 268,000. At this level, a growth of 44 percent would be needed to meet the need for services. 

New in the 2013 Case for Inclusion is highlights of three case studies—two that examine trends in managed care for those with ID/DD with reforms in Kansas and Massachusetts, and one outlining the success of Washington State in promoting competitive employment through its Employment First policy and practices.

Kansas:

·      KanCare represents one of the most aggressive and comprehensive Medicaid reforms affecting those with ID/DD, directly integrating work, health and community; broadening the scope of benefits; and prioritizing competitive employment and improving health outcomes.

·      As of January 1, 2014, individuals with ID/DD will be able to chose from the three private plans currently offered to Medicaid enrollees, all of which fully integrate medical and behavioral health benefits and home and community-based services.

·      KanCare will focus on specific outcomes to determine success, including: increased competitive employment; improved life expectancy; integration of physical health, behavioral health and home and community based services; and improved health.

Massachusetts:

·      The first state to implement a statewide pilot program (called a demonstration) for all dually eligible individuals, including those with ID/DD, Massachusetts aims to improve coordination of care, actual health outcomes, and overall quality of life for Americans with developmental disabilities.

·      Individuals with ID/DD will have new benefits available through the ICO plans, including restorative dental services, expanded personal care assistance, and greater access to durable medical equipment, and the program defines its success on actual outcomes.

·      Although the actual outcomes tracked have yet to be determined, some of the possible measures to be included include access, person-centered care, integration of services and enrollee outcomes.

Washington:

·      Washington State’s Employment First policy supports employment and day program funds targeted for working-age adults and ensures that after nine months of employment services the individual may choose community access programs.

·      By focusing its efforts on this narrow window of time, Washington’s leaders and advocates addressed the difficult goal of finding a job directly through leadership, training and innovation, and clearly defined goals.

·      The impact of this was profound: in seven years, the number of individuals competitively employed rose from 4,440 in 2004 (before the policy) to 5,562 by 2011.

“The Case for Inclusion is a valuable tool for United Cerebral Palsy and advocates across the country to use as we work to advance the civil rights protections and public policies that help support individuals living with disabilities, ensuring fair and full citizenship for all Americans. This year’s report shows in great detail the states are able to provide services and supports that result in better outcomes for people with disabilities, as well as three case studies that can serve as road maps to success,” said Stephen Bennett, President & CEO of United Cerebral Palsy. “It is our hope that the Case for Inclusion can be used to strengthen the efforts of states and advocates to advance the independence, productivity and full citizenship of people with disabilities.”

Using the interactive website, users can:

·      Compare state & national data. 

·      View state scorecards. 

·      Interact with the ranking map. 

·      See highlights of the 2013 report, the top and bottom 10 states, most improved states and those with biggest drops, and facts about the best performing states. 

·      Learn how to use the report to advocate for areas needing improvement in states, and promote achievements that maintain high quality outcomes, like eliminating waiting lists and closing large institutions. 

·      View in-depth information about each of the states feature in the case studies: Massachusetts, Kansas and Washington State. 

·      Users can pull individual state outcomes and measures, track each state’s performance over time, and compare states among one another and to the U.S. average. The Case for Inclusion data, tables and graphs are exportable and printable as needed for personal and professional use.

# # # 

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 www.ucp.org. 

Sequestration and its Effects on Special Populations

Overview

On March 1, 2013, the Office of Management and Budget (OMB will sequester approximately $85 billion in Fiscal Year 2013 spending as mandated by the Budget Control Act (BCA) of 2011.

OMB recently calculated that sequestration will require an annual reduction of roughly 5 percent for nondefense programs and roughly 8 percent for defense programs. However, given that these cuts must be achieved over only seven months instead of 12, the effective percentage reductions will be approximately 9 percent for nondefense programs and 13 percent for defense programs. These large and arbitrary cuts will have severe impacts across the government.

This overview on sequestration and its effects on special populations includes information related to: Medicaid, Social Security, and CHIP programs; Medicare; the Substance Abuse and Mental Health Services Administration (SAMHSA); Education and Special education (IDEA); the Head Start Program; and Housing.

National Implications

Medicaid, Social Security, and CHIP: While Medicaid, Social Security, and the State Children’s Health Insurance Program (CHIP) are exempt from the talks, most other health programs will be affected.

While Social Security payments are not affected, sequestration would force the Social Security Administration (SSA) to furlough most of their workforce, causing SSA offices to close earlier or permanently. Beneficiaries who visit these offices or call the 1-800 number will most likely have to wait longer for services. The furlough would also impact the ability of disability claims, retirement claims, and disability hearings to be processed.

Medicare: The sequester includes a two percent cut to Medicare, as well as much larger cuts to federal healthcare agencies. The Medicare cut is big — $11 billion just this year, according to the White House budget office. These cuts will affect those who receive Medicare, including Dual Eligible’s (those who receive both Medicare and Medicaid).

This would also result in billions of dollars in lost revenues to Medicare doctors, hospitals, and other providers, who will only be reimbursed at 98 cents on the dollar for their services to Medicare beneficiaries.

Substance Abuse and Mental Health Services Administration (SAMHSA): Sequestration would reduce access to behavioral healthcare. If sequestration takes effect, up to 373,000 seriously mentally ill adults and seriously emotionally disturbed children could go untreated. This would likely lead to increased hospitalizations, involvement in the criminal justice system, and homelessness for these individuals.

In addition, close to 8,900 homeless persons with serious mental illness would not get outreach, treatment, housing, and support they need through the Projects for Assistance in Transition from Homelessness (PATH) program. Admissions to inpatient facilities for people in need of critical addiction services could be reduced by 109,000, and almost 91,000 fewer people could receive substance abuse treatment services.

Education and Special education (IDEA):

Title I: Title I education funds would be eliminated for more than 2,700 schools, cutting support for nearly 1.2 million disadvantaged students. This funding reduction would put the jobs of approximately 10,000 teachers and aides at risk. Students would lose access to individual instruction, afterschool programs, and other interventions that help close achievement gaps.

Special Education (IDEA): Cuts to special education funding would eliminate Federal support for more than 7,200 teachers, aides, and other staff who provide essential instruction and support to preschool and school-aged students with disabilities.

Head Start: Head Start and Early Head Start services would be eliminated for approximately 70,000 children, reducing access to critical early education. Community and faith based organizations, small businesses, local governments, and school systems would have to lay off over 14,000 teachers, teacher assistants, and other staff.

U.S. Department of Housing and Urban Development (HUD): Under sequestration, HUD would not renew about 125,000 Tenant Based Rental Assistance vouchers (Section 8). This would affect over 300,000 individuals across the country. Half of Section 8 households have children, 40 percent are disabled, and 20 percent are elderly.

UNITED CEREBRAL PALSY RESPONDS TO FISCAL CLIFF VOTE

FOR IMMEDIATE RELEASE

CONTACT:

Kaelan Richards: 202-973-7175, krichards@ucp.org

UNITED CEREBRAL PALSY RESPONDS TO FISCAL CLIFF VOTE

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.”

# # #

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 www.ucp.org.

LEADING DISABILITY GROUPS USE NEW MEDICAID REPORT FINDINGS & RESROURCES AS GUIDE IN ADVOCACY FOR PROGRESS, AGAINST FAILURES IN STATES SERVING AMERICANS WITH ID/DD

FOR IMMEDIATE RELEASE

CONTACT: 

Kaelan Richards, UCP: 202-973-7175,

Lara Schwartz, AAPD: 202-521-4309, lschwartz@aapd.com

LEADING DISABILITY GROUPS USE NEW MEDICAID REPORT FINDINGS & RESOURCES AS GUIDE IN ADVOCACY FOR PROGRESS, AGAINST FAILURES IN STATES SERVING AMERICANS WITH ID/DD


The Case for Inclusion should be used a tool to determine how to build state support and service systems that work for Americans with intellectual and development disabilities                                                                                            

Washington, DC (May 23, 2012) – While progress has been made and there is more quality assurance of services provided, some states are failing to adequately serve Americans with intellectual and developmental disabilities (ID/DD), according to The Case for Inclusion 2012, a new Medicaid report released today. United Cerebral Palsy (UCP) and the American Association of People with Disabilities (AAPD) are calling on advocates to use The Case for Inclusion as a tool to determine how to build state support and service systems that work for people. The findings for 2012 reveal that:

  1. While progress has been made, there is room for improvement: 36 states can now show that 80% of the individuals with ID/DD in their states are served in the community;  

     

  2. States are becoming more involved in ensuring the quality of the services they provide: 29 states have established a comprehensive quality assurance program to measure the outcomes of the community services they deliver;  

     

  3. But there is still more to do, particularly in providing services: waiting lists for critical community services continue to climb with more than a quarter of a million, or 268,000, people with ID/DD.

The 2012 report tracks the progress of community living standards, and it shows that the states with the best services and supports for Americans living with disabilities are Arizona, Michigan and California. The lowest performing states are Arkansas, Texas and Mississippi, which have remained at the bottom of the rankings since The Case for Inclusion was first published in 2006.  

While many states appear to be financially stable, the coming intersection of an aging population, people living with disabilities, and limited financial resources, will have a significant impact on the country’s entitlement programs. 

The report examines data and outcomes for all 50 states and the District of Columbia (DC), ranking each on a set of key indicators, including how people with disabilities live and participate in their communities, if they are satisfied with their lives, and how easily the services and supports they need are accessed. By taking these factors into account, the findings develop a comprehensive analysis of each state’s progress or failures in providing critical services to individuals living with disabilities.

Since 2006, these rankings enable families, advocates, the media and policymakers to fully understand each state’s progress or lack of improvement, and help to protect successful efforts against unwise funding cuts, as well as guide future reforms to promote inclusion and enhance the quality of life for these, and ultimately all, Americans.

“Each year, UCP publishes The Case for Inclusion as part of its continuing efforts to advocate for civil rights protections and public policies that provide support for individuals living with disabilities, ensuring fair and full citizenship for all Americans,” said UCP President & CEO, Stephen Bennett. “The Case for Inclusion clearly identifies the states that are successful in providing the supports and services that people living with disabilities need, as well as states that are struggling. I urge all states and advocates to utilize The Case for Inclusion as a tool to strengthen their efforts, and to advance the independence, productivity and full citizenship of people with disabilities.”

“It is critical that states honor their obligations to people with disabilities by providing comprehensive and high-quality services through their Medicaid programs. That is why people with disabilities and our allies are fighting to preserve and improve Medicaid at the state and federal levels. The Case for Inclusion makes clear that some states are falling short and provides a roadmap for advocacy. AAPD encourages our community, members, and supporters to use this tool in our continued efforts to preserve the vital services and supports that enable eight million people with disabilities to live the lives we deserve,” said AAPD President and CEO Mark Perriello. 

Online features, reports and data:

The 2012 report and data from all previous reports is available on UCP’s website using a robust new web module and design at ucp.org/public-policy/the-case-for-inclusion. Users can:

  • Compare state & national data

  • View state scorecards 

  • Interact with the ranking map 

  • See highlights of the 2012 report, top and bottom 10 states, most improved states and those with biggest drops, and  facts about the best performing states

  • Advocate for areas needing improvement in states, and promote achievements that maintain high quality outcomes, like eliminating waiting lists and closing large institutions

  • Download the full 2012 report and previous reports 

Users can pull individual state outcomes and measures, track each state’s performance over time, and compare states among one another and to the US average. The Case for Inclusion data, tables and graphs are exportable and printable as needed for personal and professional use. 

For further detail about the report itself, there will be a press briefing at 1:00 p.m. ET (10:00 a.m. PT). Author Tarren Bragdon will provide insight into the rankings and data, which advocacy groups and individuals can use to raise awareness for key outcomes for people with disabilities.

  • Toll-free: 1-888-450-5996

  • Participant passcode: 786597

# # #

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 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 www.ucp.org.

About the American Association of People with Disabilities (AAPD)

The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership association, organizes the disability community to be a powerful force for change – politically, economically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD Web site: www.aapd.com.