Jeffrey Cooper, Recipient of the Kathy O. Maul Leadership Award at 2017 UCP Annual Meeting

Congratulations to Jeffrey Cooper, President, and CEO of UCP of Central Pennsylvania on being named the recipient of the Kathy O. Maul Leadership Award at the 2017 UCP Annual Meeting in Nashville, TN!

Thank you for all of your hard work, leadership, and dedication to individuals with disabilities!

Jeffrey Cooper, President, and CEO of UCP of Cental PA with Interim CEO of the UCP national office, Rick Forkosh.

Changing Spaces Aims to Bring Access and Dignity to a Universal Experience

Nobody should have to lay on the floor of a public restroom. While this may seem obvious for some, individuals with disabilities and their families are not always afforded another option. This is because they are frequently faced with bathrooms being unsanitary, cramped, and often inaccessible.

Society has acknowledged the urgency for coat and purse hangers in bathroom stalls to maintain the hygienic safety and convenience for the individual using the restroom, however, often it seems that the same thought has not been considered for some individuals with disabilities. Many times, their caregivers have to change individuals on bathroom floors because there is no other option: the only changing table in most bathrooms is meant for babies. This is not only unhygienic, but also undignified.

Even if toilets are deemed accessible, many times they do not have necessary items for many individuals such as a lift, changing table, or an accessible and supportive toilet. This may fully prevent some caregivers from being able to provide adequate toileting care. Common and important activities such as visiting family or traveling outside the home may become a truly daunting logistical challenge.

Individuals with disabilities and their caregivers are working at the state level in Georgia (Changing Spaces GA), and in other places across the world, to improve public restrooms so that they are accessible and dignified for all methods of toileting. Advocates have two very clear solutions: rather than only having baby-sized changing tables, adult-sized changing tables would be suitable for all age groups. Furthermore, a ceiling hoist would actually reduce the risk of injury when lifting people onto a table, and it does not take up any extra space in the stall (you can view the video from Changing Spaces GA here).

In a society where individuals with disabilities still experience many barriers, being able to change in a toilet stall with dignity should not be another problem that individuals have to face. Changing Spaces is more than a campaign for hygiene, it is about dignity for the individual and those who love them. It is also about providing individuals with disabilities and their caregivers access to a space that has just as much access as for anyone else, allowing them to live life more freely and without barriers; and most importantly, letting them be who they want to be.

To learn more, visit Changing Spaces GA or follow along with the discussion on social media using the hashtag #OFFTHEFLOOR.

Thoughts on the Future of Healthcare

This blog was written from the personal experience of UCP’s Winter Intern surrounding the future of healthcare. This post is intended to express their personal thoughts and experiences. 

On February 7, 2017, I had the opportunity to attend my first press conference as United Cerebral Palsy (UCP)’s programs and development intern. The conference was held by the Committee on Education & The Workforce at the U.S. Capitol. The speakers included several Members of Congress, as well as school nurses and parent advocates. The experience was unforgettable, marking the first time I actually got to witness what goes on behind the scenes of health policy.

As an aspiring primary care physician, health care policy has always meant more to me than simple legislation. When policy changes are made, it directly impacts how doctors can perform their care and how patients can access it. I think it is extremely important that people understand and take charge of their own health, and this is made possible through expansions in health education and health access. Being at the Capitol, and feeling immersed in the actual political process with regards to health, showed me how important it is to continue advocating for these goals– and for my future patients.

One of the stories that particularly touched me at the event was that of parent advocate Anna Crone. She spoke to the room about her daughter who was born with type 1 diabetes. Part of her treatment requires receiving daily insulin injections, and having her finger pricked up to 10 times a day to check her blood glucose levels. In 2012, before the ACA was fully implemented, Crone’s husband had lost his job and was attempting to shop for private insurance. However, he was unable to find anything due to the fact that most insurance companies denied coverage at any cost for those living with pre-existing conditions. He was eventually able to find a job and get back on private insurance, however the family said they felt a significant ease of mind knowing that their daughter would never fully lose coverage thanks to the ACA.

From this story, along with others, I began to truly understand the degree to which the ACA has impacted millions of Americans. As in the case of Anna’s husband, life may get in the way when one least expects it, and it is important to know that you or those you love will still be protected. I am so grateful to have had the opportunity to better understand the complexities of our government; and, I know that this will serve to make me a better health advocate for not only individuals with disabilities, but for all.

UCP Remembers Jack Schillinger

Gloria_Jack

On January 4, 2017, UCP lost a great friend, volunteer, supporter, leader and advisor with the passing of Jack Schillinger at the age of 96. Jack was the “face” of the Bellows Committee that he Chaired until recently, was Chair of the UCP Board of Directors in 1991, and was member of the Finance Committee for many years. In 2015, UCP honored Jack with the Chair Award at the Annual Conference in Chicago.

Jack was a huge part of UCP, since 1955,
and we can never thank him enough for his dedication to UCP and to the lives of people with disabilities.

Our thoughts and prayers are with the family at this difficult time. Jack’s obituary can be found within his guest book. To add a note of sympathy, give your condolences to the family, and to share your memories of Jack, please visit the Guest Book.

UCP and the National Council on Disability – “First Responders and Disability”

On December 9, 2016, UCP and the National Council on Disability joined together to host a day of conversation surrounding first responders and the disability community. Bringing together diverse perspectives from across the country, the day was a raw and honest look at the way law enforcement and other members of the first responder community interact with those living with disabilities.

Watch the footage (captioned) below:

 

View the Program Agenda

 

UCP Responds to Attack at the Tsukui Yamayuri-En facility in Japan

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.

Summary of SSA Comments

 

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.

 

 

 

The Achieving a Better Life Experience Act of 2014 (ABLE)

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.

Proposed Improvements:

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

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.

UCP Celebrates the 17th Anniversary of The Olmstead Decision

 

The outcome of the Olmstead v. L.C. case 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 of 1990 (ADA), 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.

 

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Under the Olmstead decision, 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 ADA, the Olmstead decision follows the anti-discriminatory nature that the ADA set many years ago. The ADA, 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 decision, 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 choose where they were to live, instead of having economic factors coerce them into making decisions they may not otherwise wish to make. The Olmstead decision 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 inevitably 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 decision.

 

 

  • 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 decision, 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.