We are deeply saddened by the events that took place at the Tsukui Yamayuri-En facility in Sagamihara, Japan early Tuesday morning. Our hearts and thoughts are with the families and loved ones of the 19 victims as well as the 26 survivors who were injured in the attack. Violence of this magnitude is shocking, particularly when it appears that the attacker was targeting people with disabilities. We at UCP, and throughout our affiliate network, believe strongly in our mission, and that life for people with disabilities and their families should be one that is free of violence.
Recently, United Cerebral Palsy submitted comments regarding the implementation of the National Instant Criminal Background Check System (NICS) and the potential impact on individuals with mental disabilities.
The Notice of Proposed Rulemaking concerning “Implementation of the NICS Improvements Act of 2007” is a proposed rule with no solid foundation. It incorrectly assumes that there is a connection between an increased risk of engaging in gun violence and having a representative payee to manage one’s Social Security benefits due to an impairment found on a “mental impairment” listing.
Four main reasons to urge Social Security Administration (SSA) to withdraw the proposed rule and why United Cerebral Palsy opposes it:
First, the National Instant Criminal Background Check System (NICS) requires the reporting of an individual to the FBI NICS database if they “lack the capacity to contract or manage his own affairs” as a result of “marked subnormal intelligence, or mental illness, incompetency condition or disease.” Having a representative payee does not meet this standard.
Second, this would create an ineffective strategy to address gun violence. It assumes that those with mental impairments are potential perpetrators of gun violence. It would create a false sense that meaningful action has been taken to address gun violence.
Third, this would perpetuate the incorrect association of mental disabilities with gun violence. This could dissuade people with mental impairments from seeking appropriate treatment or services, or from applying for financial aid and medical assistance programs.
Fourth, it would create new burdens on the SSA without providing new resources. This proposed rule would divert scarce resources away from the core focus of the SSA.
See the formal comments here.
This post was written by UCP intern Katie Tung in collaboration with UCP’s Director of Advocacy, Jennifer McCue.
There has been a lot of activity around the Achieving a Better Life Experience Act (ABLE) of 2014. To help you understand the legislation and it’s impact we’ve created a quick summary sheet. As always, if you have additional questions please reach out and let us know.
What it is:
The Achieving a Better Life Experience Act of 2014 (ABLE) allows individuals and families with disabilities to save money in a separate tax-free account that does not negatively affect their eligibility to qualify for federal support programs, most specifically Medicaid and Social Security Benefits. These savings supplement the individual’s current benefit plans and do not disqualify their eligibility to receive federal benefits, unless the benefits are related to housing expenses or the individual has ABLE accounts exceeding $100,000. Medicaid services can be retained regardless of how much is in the accounts.
The purpose of ABLE accounts is to relieve the financial stress caused by the cost of disability-related services. In additional to federal benefits, the assets in ABLE accounts can be used to cover any expense related to the disability of the individual. These expenses would include but are not limited to: education, transportation, housing, assistive technology, health services and prevention costs. If the individual were to die with assets still in the account, legislation requires the remaining funds to be paid to the state to reimburse for Medicaid benefits.
These accounts would be known as 529-ABLE accounts or 529A. Assets must be added in after-tax dollars but can be withdraw tax-free, similar to 529 college savings accounts. Donors can add up to $14,000 per year, with maximum total contributions totaling at $100,000.
Ohio and Tennessee are the first to have opened ABLE accounts to the public and Nebraska will be opening their program on June 30th. Florida will be enrolling their plan on July 1st. Since individual states are in charge of regulating their ABLE programs, enrollment fees and investment options may vary slightly.
The ABLE Age Adjustment Act was introduced in March 2016 to raise the eligibility age to create an ABLE account from 26 to 46 years old. The current legislation requires the individual to have developed their disability before the age of 26. By raising the onset age, ABLE could better accommodate individuals who acquire disabilities later in life, such as disabled veterans, spinal cord injuries, heart failure, or other later-developing disabilities.
The ABLE to Work Act would allow individuals with a disability who are employed to personally contribute to their ABLE account. In addition to the $14,000 that can be contributed by parents or guardians, the beneficiary would be able to contribute funds up to the federal poverty level, currently $11,770 per year. Individuals would still qualify for Savers Tax Credit, a tax credit for individuals of low-to-moderate income saving for retirement.
The ABLE Financial Planning Act moves to allow families to rollover savings from their child with a disability’s 529 college saving account to an ABLE account and vice versa. This would allow families to draw previous college savings and put it in their child’s ABLE account without suffering from any taxes. It would also allow families to later draw from ABLE accounts to put into their child’s college savings account.
Outline of ABLE Act – http://crenshaw.house.gov/index.cfm/able-act
Ohio’s ABLE program (STABLE) – http://www.stableaccount.com/
Tennessee’s ABLE program – http://www.abletn.gov/
Definitions and qualifications for Savers Credit – https://turbotax.intuit.com/tax-tools/tax-tips/Taxes-101/What-Is-The-Savers-Credit-/INF15617.html
ABLE Age Adjustment bill – https://www.govtrack.us/congress/bills/114/hr4813
ABLE Financial Planning bill – https://www.govtrack.us/congress/bills/114/hr4794
ABLE to Work bill – https://www.govtrack.us/congress/bills/114/hr4795
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 Olmstead Act began in Georgia, where two women, Lois Curtis and Elaine Wilson, saw constant segregation due to their intellectual disabilities. Their frequent trips to state mental hospitals brought attention to the fact that community support and personal choice for individuals with disabilities was lackluster, almost nonexistent. After being represented by an attorney at the Atlanta Legal Aid Society, Lois, and later Elaine, saw her position for removal of institutional bias being taken up to the U.S. Supreme Court for consideration.
It was found under the Americans with Disabilities Act (1990), that discrimination against an individual with disabilities was illegal, and that the behavior portrayed towards both Curtis and Wilson held both legal and moral conflict.
Under the Olmstead Act, The Court stated that individuals with disabilities have rights that are inclusive of:
- Prohibition in the segregation of individuals with disabilities in community living
- The ability to receive services in integrated environments
- Services received may be appropriate to individual needs
- The ability to receive community based services rather than institutionally based ones, in the event that:
- Community placement is the appropriate course of action
- The individual in question does not oppose to the treatment being offered
- The individual’s placement can be accommodated in a reasonable manner
As a section under the Americans with Disabilities Act, the Olmstead Act follows the anti-discriminatory nature that the ADA set many years ago. The Americans with Disabilities Act, which celebrates its 26th signing anniversary, prohibits discrimination against individuals with disabilities in a number of areas that include transportation, employment, government activities, and more. According to the Olmstead Act, unjustified segregation would violate Title II of the ADA, which stated that individuals with disabilities may not be discriminated against when it came to State and local government provided public services. This gave individuals with disabilities the right to chose where they were to live, instead of having economic factors coerce them into making decisions they may not otherwise wish to make. The Olmstead Act tied together the anti-discriminatory nature of the ADA by not legally binding individuals with disabilities to be institutionalized, meaning that there legally cannot be a system that will inevitable end up with a majority of the disability community in institutions.
For individuals with disabilities, these acts held the power to allow them to work in traditional office environments, live in community settings that foster independent lifestyles, receive equal opportunities when it came to a variety of traditionally implemented services, and most importantly, have the right to decide where to live, without economic or legal influences.
Here at UCP, we appreciate the previously implemented and ongoing efforts for integration, habilitation, and opportunity for expansion for those who live with disabilities. Many of our affiliates provide services that both directly and indirectly relate to the Olmstead decision. For example, most of our affiliates offer community living based services. Outlined below are a sampling of specific services that follow ideals set by the Olmstead Act.
- CHEERS, a.k.a, Center for Habilitation, Education, Enrichment, and Recreational Services, which is under the UCP of Central California affiliate is a program led through UCP of Central California that holds services that provide vocational training, life skills, and classes in various areas that are integrated within the community and are available for those who live at homes with their families. The thought that individuals would not have to necessarily be institutionalized in order to receive aid is something that has brought to surface many programs similar to CHEERS.
- Within the UCP of Central Pennsylvania lies In-Home and Community Support Programs, which offer a variety of training and support to individuals with disabilities in the realm of opportunities that allow them to participate further in the community around them. These community integration and in-home habilitation programs allow for an individual to feel as though they can be cared for and supported throughout processes in any environment that they choose. It need not have to be an institution that can provide habilitation, but rather, it can occur within the home, simultaneously alongside community support options.
- Through UCP of Central Arizona, the Summer Program, as an extension of the Day Treatment and Training for Kids and Teens Program, works on even further enhancement and training of social, community, cognitive, and communication skills for kids and teens. This program focuses on the individual needs of each child, and exposes each individual to real life scenarios in preparation for community integration. This program, along with many other of it’s kind, provides services of transportation to and from the individual’s home/school, making it clear that such services, again, are not contingent upon whether or not an individual is residing at home or within an institution. Usually, habilitation skills are not necessarily provided for children outside of an institution setting, however, as can be seen from such programs, not only is the child free to reside wherever he/she may desire, but he/she may also be provided with many character building and habilitation services that otherwise would confine them to institutions.
In addition to skill specific programs, services such as Child Development, Respite Care, and Early Intervention are made available in a location of the individual’s choice, making it clear that community integration, and most of all, personal choice, is the priority when it comes to the creation and reformation of programs focused towards individuals with disabilities.
While disability rights and removal of bias and segregation from the disability community has seen great progress, there is much still much to be done. On the 17th anniversary of the signing of the Olmstead Act, we at UCP wish to not only celebrate, but also take part in movements that further advocate for the rights that all individuals are entitled to.
We want to hear how the Olmstead decision has impacted your life! Share your stories using the hashtag #OlmsteadAction on social media.
Find out more information on the Administration for Community Living’s celebration of the Olmstead Anniversary here.
United Cerebral Palsy held its Annual Conference on April 4-6, 2016 at the Vdara Hotel and Spa in Las Vegas. This year’s theme for the conference was “Going All In.” UCP affiliates from across the country gathered to take part in this year’s conference with a special focus on the future of UCP.
The first full day of the conference began with the opening plenary on innovation and technology. Featured speakers included: Bruce Borenstein, CEO of AfterShockz, a company that creates headphones which use vibrations to communicate sound, unlike typical over-the-ear or in-ear headphones. Mr. Borenstein gave one of three keynote addresses, which centered on using technology to create accessibility to better the lives of people with disabilities and their families.
Dr. Rupal Patel, another keynote speaker, gave the audience a glimpse of the amazing work that is being done at her company, VocalID. Finally, Dr. Homayoon Kazerooni of SuitX spoke about the advancements on gait training for those living with CP, and the work of SuitX to try and create customized, user-friendly experiences for all. During the evening, a reception was held where we recognized our retiring Executive
Directors and CEOs. Jeff Snyder, CEO of UCP of Central California, was honored along with Linda Johns, Executive Director of UCP of East Central Alabama; Rick Forkosh, CEO of UCP of Hartland; Carol Hahn, Executive Director of UCP of Nebraska; and Les Leech, CEO of UCP of Southwest Florida. A special congratulations goes to Dave Carucci, Executive Director of UCP of San Diego on receiving the Kathy O. Maul Leadership Award, which honors one outstanding executive director each year.
A “Town Hall” style meeting was held on Tuesday April 5, 2016. This was an opportunity for our affiliates to come together and voice their thoughts and opinions, as well as to discuss the future of UCP. We celebrated our Awards for Excellence winners at a special luncheon. The Awards for Excellence Luncheon recognizes the hard work and time of the wonderful volunteers who donate their time to our affiliates across the country.
The Nina Eaton Program of the Year Award was awarded to UCP of Oregon and Southwest Washington for their Employment Solutions Program. The Ethel Hausman Award went to Maren Jacobs of UCP of Berkshire County. The Ethel Hausman Award honors a local UCP volunteer who has made an outstanding contribution to UCP and to the quality of life of people with disabilities through their work.The Outstanding Youth Award was presented to Rachel Prior for the volunteer work with UCP of Greater Cleveland. The “Life Without Limits” Award was presented to Phillip Evans.
After the Awards for Excellence Luncheon, affiliates were invited to take part in facilitated small group discussions. These discussions also served as an opportunity to give thoughts and opinions on the future of UCP and the affiliate network.
Breakout sessions were held on the last day of the conference. The topics for the breakout sessions included: The Future of Early Childhood Intervention with Dr. Jim Blackman, Medical Consultant for UCP; “Making It Work,” featuring The Employment Workgroup, which discussed employment for people with disabilities; and “ABC’s of Caregiving” presented by UCP’s Director of Advocacy, Jennifer McCue. “ABC’s of Caregiving” focused on the recent ruling from the Department of Labor on overtime for caregivers. Stephen Bennett, CEO of UCP National, presented on the “The State of Disability Today.” This was a special session held for our sponsors and exhibitors to learn more about the current disability community and as a business how they can best serve them. Finally, there was a special STEPtember 2016 breakfast, where attendees learned about the changes to STEPtember for this year and how to make it as lucrative and beneficial as possible for participating affiliates.
The winners for our
“Exhibitor Bingo” were also announced at the end of the conference. Congratulations to the winners: Chris Adams of Stepping Stones, Inc. in Cincinnati; Mike Ward of UCP of Metro Detroit; Lynn Carpentier of Gillette Children’s Specialty Hospital/UCP of Minnesota; Monica Elsbrock of UCP of Nevada; Donna Fouts of UCP of Hawaii and Dr. Dave Piltz of UCP of West Central Wisconsin. A special thank you to Convaid, Troy Technologies, and AfterShockz for their generous donations for our “Exhibitor Bingo.” The prizes totaled over $6,000 and will given directly to clients in each affiliate’s territory.
Thank you to all who helped to make this year’s Annual Conference such a success!
THANK YOU TO OUR SPONSORS:
Earlier this week, the Senate passed the Older Americans Act (OAA). This bill contains the eligibility fix for the national family caregiver support program that will now include older relative caregivers (aged 55 and over) of their adult children with disabilities (aged 18-59).
The National Family Caregiver Support Program was the first federal program to recognize the needs of the nation’s family caregivers who provide the vast majority of long-term services and supports. This program not only funds respite, but individual counseling, support groups, and caregiver training for family caregivers, primarily for those who are caring for the aging population.
With the increasing number of Americans who are caregivers of their adult children with disabilities, we are thrilled to see this improvement in the program. There are over 800,000 caregivers of persons with intellectual and developmental disabilities (ID/DD) who are over the age of 60. This number is projected to grow substantially with the aging of the “baby boomer” generation. People with intellectual and developmental disabilities are also living longer due to medical advances. As parents of these individuals age, they will require more support to be able to continue providing care to their adult children and avoiding costly and unwanted institutional placement.
More than at any other time, when Medicaid, Medicare, and Social Security are being threatened, helping family caregivers to continue providing long-term services and supports is good public policy.
The National Family Caregiver Support Program and the Older Americans Act have been on our radar as they have direct impact for improving and securing a life with out limits for those living with disabilities and their families.
To help guide your call, we have put together a list of talking points.
As we roll into the New Year, we wanted to update you quickly on a few policy issues that wrapped up in the end of the year and will be on our radar throughout 2016:
Caregiving and Respite Care
The issue of caregiving, and providing resources and supports to those who receive and those who provide care is an issue we will continue to invest and pay attention to through 2016. To end the year, Congress showed support for Respite Care and Caregiving by passing the Lifespan Respite Care Act and providing increased funding for the National Caregiver Support Program. Included in the end of the year bill passed to fund the Federal Government was a provision that increased funding for the National Caregiver Support Program by $5 million and Lifespan Respite received an additional $1 million! This is real movement for supporting family caregivers. In the next months we’ll update you on what’s next for caregiving policy and programs and what you can do to help ensure these programs continue to grow.
In December, Congress passed and the President signed Every Student Succeeds Act (ESSA), which goes farther to assist students with disabilities, then No Child Left Behind did. The new bill incorporates data and new knowledge about how to most effectively teach students with disabilities so they can successfully graduate and become post high school career/college ready. It also ensures accommodations for assessments for students with disabilities; requires local education agencies to provide evidence-based interventions in schools with consistently underperforming subgroups (including students with disabilities), requires states to address how they improve conditions for learning including reducing incidents of bullying and harassment and overuse of discipline practices and reduce the use of aversive behavioral interventions (such as restraints and seclusion). Moreover, this new legislation significantly shifts authority to make very important education decision to the states and school districts. Throughout 2015, UCP participated in meetings, signed letters of support and worked with stakeholders to ensure the bill would strengthen provisions to ensure that all students have the opportunity to receive a quality education. This bill is one we do support. Now, over the course of 2016, we will be updating and reaching out to you to ensure that state level practices being put forward reflect what is best for those living with and impacted disabilities.
Complex Rehabilitation Technology
Coverage and reimbursement for Complex Rehabilitation Technologies is an issue that we’ve been working with you, and with others here in D.C. on for the past year. Specifically, we have been concerned about the Centers for Medicare and Medicaid implementing a provision to restrict access to complex and critical wheelchair components and accessories. The provision was set to go into effect on January 1, 2016. In a show of support for access to these critical technologies — Congress included in S. 2425, the “Patient Access and Medicare Protection Act” a one-year delay preventing CMS from implementing this restrictive provision!
While Congress did not include a permanent fix for the problem this one-year delay provides UCP, along with others in the community, the opportunity in 2016 to further our work on the wheelchair accessories issue and in establishing needed improvements overall for reimbursement of complex rehabilitation technology within Medicare and other health insurance programs. We will continue to update and talk to you over the course of the year on how to engage on this important issue!
In the next few weeks, each of the 50 states will be releasing their Workforce Innovation and Opportunity Act plans for public review and comment. Last year, a new law called the Workforce Innovation and Opportunity Act (WIOA) was passed. This new law is vital for the 1-in-5 Americans who have a disability, as it requires the entire workforce system to become accessible for people with disabilities.
Every state must create a Unified Integrated State Workforce Plan before March 2016. Once a state has completed their plan, they must publish it online. There is an opportunity for organizations to review their state plan and for public comment about the ways each respected plan can help people enter the workforce. This means a state plan that will be inclusive of the most integrated job opportunities for people with disabilities.
We are working with others in the community to create tools and guidance for our affiliates and individuals to submit comments and will circulate in the coming weeks.
March is National Developmental Disability Awareness Month
March is National Developmental Disabilities Awareness Month. We will be collaborating with other disability organizations to promote a social media campaign to highlight the many ways in which people with and without developmental disabilities come together to form strong, diverse communities. The goal will be to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, as well as awareness to the barriers that people with disabilities still face in connecting to the communities in which they live.
Stay tuned for more information, including dates for webinars on how to become involved, tools for posting on social media and more information on how to engage and leverage this campaign!
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!
Cerebral Palsy (CP) is one of the most complex and often misunderstood neurological disabilities across the world. CP affects each individual differently, with symptoms ranging in severity, from weakness in the limbs to complete lack of motor function. CP can come in many forms: Spastic (the most common), Ataxic, Syskinetic, or even a combination of types. Common signs of CP can include: a “floppy” appearance (specifically in the limbs), a delay in reaching milestones (like crawling or walking), or other delays.
Cultural beliefs are different around the world and for some, having a disability carries a cultural and social stigma. This can often lead to isolation of the individual with CP or shame on the mother.The stigma can have many ripple effects for the family of the person with CP or any other disability. One of the goals of World CP Day is to help make the public aware of CP and to help to end the misconceptions that surround it.
CP is a lifelong disability and there is no cure. Treatment for cerebral palsy can come in a range of different methods. If there are no steps taken to treat it, CP may cause the joints to worsen over time. Treatments can include both physical and occupational therapies.
UCP is proud to be apart of World CP Day on October 7 and the movement to help better understand Cerebral Palsy and the 17 million people worldwide who have it.