UCP Expresses Concerns About Graham-Cassidy Legislation



As Members of Congress continue to discuss ways to improve the healthcare system in bipartisan hearings, United Cerebral Palsy expresses concerns about the Graham-Cassidy legislation being considered by some Senate Republicans.


The health care needs of individuals living with cerebral palsy and people with other forms of disability are complex, intensive, and diverse. Providers in the UCP affiliate network bring substantial value to the health care system through their approaches to the care of individuals with disabilities, including by offering important services in partnership with state Medicaid programs. Their innovative service models and practices, research, and use of technology have significantly improved access, community integration, and long-term outcomes for 176,000 clients served nationwide.

Capping and reducing spending for Medicaid, a primary source of funding for disability health services, could compromise needed care such as habilitation and rehabilitation services and also affect the ability of individuals with disabilities to thrive in their communities, including through greater use of long-term services and supports (LTSS). More broadly, such action undermines the innovation in care delivery that ensures that we all live lives without limits. And, this does not sustain the vision that forged United Cerebral Palsy back in 1949 as an organization dedicated to finding better alternatives to institutionalization for children living with cerebral palsy.

In the days ahead, we will be sharing our concerns with Senate offices and hope you will join us in opposing this bill that would impede the ability of our affiliate network to care for people with disabilities. United Cerebral Palsy is a part of major national coalitions focused on the preservation of coverage for individuals with pre-existing conditions, continued coverage for rehabilitative and habilitative services, and protecting Medicaid. In short, we are not alone in our concerns and we will continue to work together to support the needs of individuals with disabilities and the providers who serve them.


Senators need to hear from constituents, and we hope you will tell your story. To learn more about UCP’s public policy work and to get involved, please visit http://ucp.org/what-we-do/public-policy/.

#KnowMedicaid

 

As Google search results indicate, many more Americans have grown concerned about losing their (or a family member’s) Medicaid benefit. We at UCP are receiving an increasing number of inquiries about Medicaid and the services and supports it provides for many individuals with disabilities and their families.

 

Even without a pending health care bill in Congress, it can be overwhelming to navigate the process of accessing the funding and benefits necessary to receive the support needed so you or your loved one can live a life without limits. While there is no one way to simplify the process, there are ways to make it a bit easier. The tips and tricks below will help you in your conversations with Medicaid and other agencies.

 

When you’re done checking out our tips, you will also find a PDF guide with the contact information for Medicaid (and related agencies in all 50 states) at the bottom of this post.

 

Keep Records of All Conversations, and Be Sure to Seek Clarification When Necessary:

 

Whenever calling your state or any other entity) regarding services and supports, be sure to keep notes about your conversation including: who you speak with , what department they are in, what department they refer you to, and any other pertinent details.

 

This is really important in the case that there is any confusion or conflicting information during the process , because you will be able to provide past information about what you were told and when.

 

It is also a great idea to ask the person you are speaking to to follow up with an email, if possible; that way you are able to see their summary of the conversation, and open up a dialogue that may help in the future should there be any misunderstandings.

 

Remember That State and Federal Agencies Are Not Identical:

 

When working with Medicaid, or any other government program or agency, it is important to be aware of the difference between the agency in your state, and the federal agencies in Washington, DC.

 

While agencies can be connected, the state agency handles state programs and issues and the federal agency counterpart handles national ones. When getting information about services and supports, it is vital to differentiate between what is available and provided by your state, and what might also be available on the national level.

 

This is also key because these differences affect how programs are funded, and may alter the process required to become eligible. Sometimes programs may be jointly run on the state and national level, but it is still important to be aware of when you’re talking to, or about, your individual state versus when you’re looking at things on a national level.

 

Not All States Run Programs the Same Way, (or a Call Agencies by the Same Name):

 

Another reason it is important to be aware of the difference between state and federal programming is because the way programs, such as Medicaid, are administered can vary significantly from state to state.

 

Therefore, be sure to investigate how things are run in your specific state, and not go off of the experiences of an individual who may live someplace else. A program that is provided through the Department of Health and Human Services in one state may be provided through the Department of Welfare in another.

 

Before getting discouraged and thinking something doesn’t exist, always remember to try a different name or department, because you never know what it might fall under in your state.

 

Always Ask for Other Options:

 

Just because one program, grant, or service is not an option for you, doesn’t mean there isn’t something out there that can help with your situation. Even if you find out that the program you are looking into will not work (or be available) based on for your situation,, be sure to ask the person you’re speaking with if they know of any other programs that may be able to help.

 

When considering your options, it is also important to remember that different programs have different eligibility requirements. So, be sure to provide as much information as possible to determine if you are eligible for a specific program.

 

Obtaining services through Medicaid (or other agencies) is rarely a simple process, but we hope that these tips– as well as our guide of various state offices involved in the administration of services and supports for individuals with disabilities– will make your journey a bit easier.
Do you have any other tips or tricks you would like to add to the list? Let us know on Facebook or Twitter using the hashtag #KnowMedicaid. To learn more about Medicaid in your state, check out our resource guide.

The Disability Integration Act (DIA) of 2017

It has been nearly 20 years since the Supreme Court ruled that individuals with disabilities have the right to live in the community, but even today, not all people with disabilities in the United States are given that meaningful option.

A new bill, The Disability Integration Act (DIA) of 2017, was introduced by Senator Charles “Chuck” Schumer (D-NY) in the Health, Education, Labor, and Pensions Committee to combat this issue. This bill would ensure that states are providing long-term services and support (LTSS) to individuals with disabilities In community-based settings, such as the individual’s own home. It also further enforces the American with Disabilities Act’s (ADA) mandate on integration.

Alongside the ADA, court cases, such as Olmstead v. L.C. (1999), have set the precedent for this legislation. The Olmstead ruling states that under the ADA, if placement in a community-based setting is appropriate, and the individual would prefer to live there, the state must comply with their wishes and fulfill those accommodations as those are their civil rights. The Disability Integration Act would help to make certain that every state is securing these rights in a timely manner, and that states are upholding the many details of this ruling.

The Olmstead ruling clarifies that “institutionalization is unjustified when:”

Supporters of the DIA legislation seek to provide a life that is as independent as possible for those individuals who can “handle and benefit” from the choice of living in a community-based living situation. This would allow individuals with a disability to have access to their greater community and have the opportunity to participate in economic, social, and educational advancement. 

The most frequent options for living independently are based on benefits provided by Medicaid. The funds provided to individuals through Medicaid afford individuals the ability to pay for their community-based services, such as personal care assistants, without having to worry about how they are going to pay for housing, utilities, or other additional necessities.

The DIA bill would further reinforce the integration mandate under the ADA, by ensuring that every individual that qualifies for LTSS has a “federally protected right” to become integrated into an community, and would create an extensive “state planning requirement” that imposes objectives to help transition individuals out of institutions. Furthermore, there is a requirement for states to annually publish a public report about the number of individuals with disabilities who continue to be served in institutions versus in their communities, as well as the number of individuals who have made the transition.

 

To learn more about the Disability Integration Act and other public policy topics, and to get more involved, check out our public policy resources.

UCP Expresses Concerns About American Health Care Act of 2017

Last Thursday, Members of the House of Representatives passed, by a narrow margin, H.R. 1628 (the American Health Care Act of 2017, or AHCA for short). United Cerebral Palsy, along with our colleagues in Washington, expressed concerns about the bill in its current form (as well as previous proposals that were circulated).

 

We joined coalitions focused on the preservation of coverage for individuals with pre-existing conditions, coverage for rehabilitative and habilitative services, and protecting Medicaid. We also took part in advocacy efforts with the Consortium of Citizens with Disabilities, a coalition of 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society. In short, we are not alone in our concerns and we will continue to work together to fight this harmful bill.

We share the concerns many of you have voiced to us about the lack of review by the Congressional Budget Office of this latest bill, and the potentially devastating consequences the House bill as written could have on the 175,000 families served by UCP’s affiliate network (and really all individuals with disabilities who rely on Medicaid for health coverage and/or long-term services and supports).

We are hopeful that as the Senate deliberates, more information about the projected impact of the House bill will become known and that the Senate will not pass a bill that would bring harm to our community.

Senators need to hear from constituents, and we hope you will tell your story. To learn more about UCP’s public policy work and to get involved, please visit http://ucp.org/what-we-do/public-policy/

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, former 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.”

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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 www.ucp.org.