1) What’s Happening in the Nation’s Capital?
NCIL Meets with Whitehouse to Discuss Community First Choice Option
2) National News
Healthcare Update
Senior Groups Reject Healthcare 'Scare Tactics'
Recent Rulings Against P&As Underscore the Importance of the Circuit Court of Appeals
3) State News
Tell Illinois Governor Quinn to Stop Cuts to Home ServicesShare
At Sestak Town Hall, Disability Activists Draw Their Own Red Line on Long-Term Care Funding
4) Announcements and Additional Resources
New NCIL “Policy Shop” Ready for Busy Fall Congressional Session
NCIL Welcomes new Policy Analyst, Lacy Pittman
Proposal for a Community First Choice (CFC) Medicaid State Option for Inclusion in Healthcare Reform
NCIL Meets with Whitehouse to Discuss Community First Choice Option
On August 27, as a follow-up to the meeting that President Obama had with disability community representatives on July 24, a group of advocates for home and community-based long-term services and supports met with Nancy-Ann DeParle and other senior staff at the White House to discuss the Community First Choice Option.
The disability representatives thanked the President's staff for his strong leadership on enacting comprehensive health reform that will help advance the goals of the Americans with Disabilities Act by eliminating disability-based discrimination in health care coverage and barring pre-existing condition exclusions.
The meeting participants had a frank and productive discussion concerning the possible opportunities and barriers of including a Community First Choice Medicaid State option (CFC Option) in the final health reform legislation. The CFC Option is an idea that emerged from discussions with Senator Harkin's office and Representative Davis's office as a way to make progress on home and community-based services and supports under Medicaid and a way to lay the foundation for later enactment of the Community Choice Act. It is a proposal that has support from the cross-disability community, including leaders from the NCIL, ADAPT, the Consortium for Citizens with Disabilities (CCD), AAPD, the National Coalition of Mental Health Consumer Survivor Organizations, Autistic Self Advocacy Network and Self Advocates Becoming Empowered (see attached fact sheet on the CFC option)
The disability representatives thanked the White House Staff for their time and support for expanding choices in long-term services and supports, and all agreed to keep open the lines of communication as health care reform heats up again when Congress returns from the August recess.
Attending the meeting from the White House were Nancy-Ann DeParle, Director of the White House Office of Health Care Reform; Tina Tchen, Director of the White House Office of Public Engagement; Jeff Crowley, Director of the White House Office on National AIDS Policy and Senior Advisor on Disability Policy within the Domestic Policy Council; Kareem Dale, Special Assistant to the President for Disability Policy; and Keith Fontenot from the Office of Management and Budget. Mr. Fontenot's responsibilities for OMB include long-term services and supports policy.
Attending the meeting from the disability community were Mike Oxford and Cassie James from ADAPT, Kelly Buckland and Lou Ann Kibbee from the National Council on Independent Living, Marty Ford of The Arc/UCP Disability Policy Collaboration and CCD, Chester Finn of Self Advocates Becoming Empowered, Daniel Fisher of the National Coalition of Mental Health Consumer Survivor Organizations, Ari Ne'eman of the Autistic Self Advocacy Network, Suellen Galbraith of ANCOR, Lee Page of Paralyzed Veterans of America, Andy Imparato of the American Association of People with Disabilities, and Bob Williams, President Clinton's Deputy Assistant Secretary for Disability and Long-term Care Policy who attended as a private citizen.
Learn more about the Community First Choice Option under Additional Resources.
Healthcare Update
The biggest news in healthcare and long-term care reform over the last week was the passing of Senator Edward M Kennedy of Massachusetts. While NCIL and the rest of the nation mourn his loss and celebrate his life, political insiders are already assessing the impact this will have on the healthcare reform process. There are several issues emerging that relate to the loss. One concern is the absence of his skill and leadership in the Senate, and how that will hinder the ability of Congress to navigate the difficult path to successfully reform our healthcare and long-term care systems. Senator Kennedy was known as someone who could reach across the aisle to Republicans to get meaningful compromises on important reforms. Senator Kennedy was liked and respected by many of his colleagues in the Senate and used his relationships and skills to make progress. Some analysts feel that his void may be too great to overcome.
Another issue is that Senator Kennedy was the potential 60th vote needed to ensure the Senate passage. Senators could “filibuster” a piece of legislation on the floor, unless 60 or more Senators vote for “cloture”, which would end debate and move the bill forward to be voted on. This means that in theory, if a bill was filibustered by Republicans, Democrats might have been able to override it and pass the bill with only 51 votes.
The third issue that political analysts are looking at is how the death of the Senator will stem outrage and allow a constructive debate to proceed. It is not expected that Congress will simply pass reform to honor the Senator, as this issue is so big and decisive, but it could motivate some members who are hesitant or on the fence to support comprehensive reform.
Six Senators on the Senate Finance Committee have begun to meet by phone or webcast to work on agreements towards a bipartisan bill. There has been doubt cast over the ability of these Finance Committee members to reach an agreement in light of comments by the Republicans that indicate they have been purposely slowing the progress of the bill down, and that they would only support a bill with 70-80 votes in the full Senate. Democrats have also caused controversy by suggesting that they might support the process known as “reconciliation”. Reconciliation is a specific process to move legislation through the budget process, as opposed to a stand-alone bill. The reconciliation process is not subject to a filibuster and would only need a simple majority of votes, making it potentially easier for Democrats to pass a bill in the Senate. The down side of that process is that the entire healthcare reform legislation could not be passed this way. Only parts of the healthcare reform legislation that affect the federal budget in a positive or negative manner could be included. Parts of the bill that have no effect on the budget would have to be put into a separate bill. The Senate has been informally shooting for a deadline of September 15th to have a bill ready to begin mark-up in their Committee. To this point, very little is known about what is in the Finance Committee version of healthcare reform, and this has slowed the entire process down, as the other four Committees in Congress are looking to the proposal to deal with expanding coverage while not exploding the federal budget.
In the House, the Energy and Commerce Committee staff, the last committee of three House Committees to pass a version of HR 3200, has been working on preparing for additional amendments to their bill. That is unusual because typically amendments are offered and voted on after a bill has been passed out of the committee. The Energy and Commerce Committee is working with the Rules Committee in the House to figure out how this can be done. What is promising is that a healthcare bill is close to being put on the floor of the House of Representatives for a vote – closer than ever to seeing reform become a reality. The effort is far from over, as there are many unknowns in the Senate Finance version and all five different versions need to be one final version, passed out of both the House and Senate, before the President can sign anything. If reform still happens, it will be a lot closer to the New Year than expected.
For more information about the healthcare and long-term care reform process happening in Washington DC, contact NCIL Policy Analyst Jason Beloungy at 202-207-0334 (toll-free 1-877-525-3400), ext. 1008.
Senior Groups Reject Healthcare 'Scare Tactics'
Source: National Public Radio
At high noon on one of the hottest days of the summer, a small group of senior citizens sweated it out in front of state GOP headquarters in Raleigh, N.C., asking the Republican Party to stop using what they called "scare tactics" to turn senior citizens against overhauling the health care system. It could be the start of a silver backlash against what some say is a misinformation campaign about health care reform.
The members of the Alliance for Retired Americans were angry about a recent column by national GOP Chairman Michael Steele, who said health care reform would lead to rationing for the elderly and deep cuts to Medicare. Protester Michael Gravinese says that's not true — and he thinks Steele is trying to frighten seniors like him
"It's pretty blatant and obvious what they're doing," Gravinese says. "And that's not for the good of the country. Let's have a reasoned, honest debate about health care." Read More.
Recent Rulings Against P&As Underscore the Importance of the Circuit Court of Appeals
Two bad decisions were made by the Fourth and Seventh Circuit Courts of Appeals this summer. In both cases, two separate state Protection & Advocacy agencies were attempting to get peer review records in order to investigate deaths or injuries in state owned and operated institutions for individuals with disabilities. Before reading details about these cases below, NCIL would like to remind members why we spend time being engaged in judicial nominations for the federal Circuit Court of Appeals. In the example below, you can see how one Circuit Court’s bad decision created an almost immediate precedent for another. The Fourth Circuit Court of Appeals, which offered the first decision, is the same court that Judge Andre Davis has been nominated for. NCIL strongly opposes Judge Davis’ confirmation to this court.
The U.S. Senate confirms these federal judges and every NCIL member has two U.S. Senators who can vote for or against future nominees. NCIL hopes these two cases shed light on the importance of the grassroots being involved in the nomination of federal judges, in addition to Supreme Court Justice.
The Fourth Circuit held in VOPA v. Reinhard that state agency P&As could not sue state officials in federal court for violating the access provisions of the DD and PAIMI Acts. The immediate consequence of this decision is that the Virginia P&A, which is a state agency P&A, would have to enforce its access authority by getting an order from the Virginia State Supreme Court or by suing in one of the many Virginia state trial courts. The Seventh Circuit Court of Appeals has followed this decision in Indiana Protection and Advocacy Services v. Indiana Family and Social Services Administration. If other circuits adopt the reasoning of the Fourth and Seventh Circuits, state agency protection and advocacy agencies could be unable enforce their access authority in federal court.
The Seventh Circuit decided in Indiana Protection and Advocacy Services v. Indiana Family and Social Services Administration that P&As have no private right of action to enforce their access authority in court. In other words, the Seventh Circuit has held that P&As cannot sue to enforce their access authority in any court. The court suggests that the only remedy for violating the access statutes would be termination of federal funding under the DD and PAIMI Acts.
Both cases were decided by three-judge panels. The Virginia and Indiana P&As filed petitions for rehearing to seek review by the full court. The National Disability Rights Network filed amicus briefs in support of both P&As. The United States filed an amicus brief in support of the Virginia P&A in the Fourth Circuit case. However, the Fourth Circuit ultimately denied the petition for rehearing by the full court. The Virginia P&A is deciding whether to file a petition for certiorari, which a losing party files with the Supreme Court asking it to review the decision of a lower court. The United States also intends to file an amicus brief (a testimony that has not been solicited by any of the parties, or a learned treatise on a matter that bears on the case. The decision whether to admit the information lies with the discretion of the court in support of the Indiana P&A’s petition for rehearing if the U.S. Solicitor General approves. The Seventh Circuit has not yet made a decision on the petition for rehearing.
Tell Illinois Governor Quinn to Stop Cuts to Home ServicesShare
Source: Access Living
Cuts to the Department of Human Services Home Service Program pose threats to the independence of persons with disabilities. Thousands of people with disabilities around Illinois use Personal Assistant services and coordinators to allow them to live in their own homes rather than in costly nursing homes. This program saves the state tens of millions of dollars a year, and gives consumers the opportunity to live with dignity as members of their communities.
These cuts include:
- Cuts in service hours for Home Service Program leading to deteriorating quality of life for people with severe disabilities
- Elimination of Personal Assistant Programs that help consumers hire and manage their
Home Services and have control over the care they receive.
- Threats to lower asset limits for people getting Home Care leading to unemployment and impoverishment for people with disabilities who work
You Can Help! Call Illinois Governor Quinn at: (312) 814-2121. Tell Him. You made a mistake. Stop the cuts to Home Services Now.
At Sestak Town Hall, Disability Activists Draw Their Own Red Line on Long-Term Care Funding
Source: Huffington Post, by Daniel Denvir
I scanned the aisles for mustachioed presidential portraits and Obamacare warning-signs at a health care town hall with Rep. Joe Sestak (D-PA) in Philadelphia. "Before we get started," intoned the understated moderator, "we know that these meetings here in the Commonwealth have been somewhat heated."
Yesterday's meeting was hosted by Liberty Resources, an organization that promotes independent living for disabled people, and the Philadelphia chapter of ADAPT, a seriously militant disability rights organization. But the town hall with Sestak, who is challenging Republican-turned-Democrat Senator Arlen Specter in the party primary, went uninterrupted, the ground rules unchallenged. No teabaggers showed up. No screaming. No fearful questions about "death panels" or socialism, national or otherwise. Yet the nearly 200 disability rights activists that showed up were mad.
For disability rights activists, the public option--which they do support--isn't the only red line that Democrats shouldn't cross. Activists say they will oppose any bill that fails to include the core provisions of the Community Choice Act, legislation that gives in-home long-term care the same funding priority as nursing home care. These people want to live independently--an option that, fiscal watchdogs be advised, turns out to be almost three times cheaper than institutional care.
As I wrote in a piece this June about the situation in Pennsylvania: Federal and state Medicaid law requires that disabled people receive a state-granted waiver to get reimbursed for homecare, making the system highly biased toward placing people in institutions. This is the system's default setting, especially for the elderly disabled.
The Community Choice Act would change what activists call the "institutional bias" in long-term care funding. This is the "rationing" that actually takes place under our current system. While the House legislation didn't include these long-term care provisions, activists are hopeful that Senate allies will come through and that a comprehensive bill will make it out of conference.
In a debate dominated by crazed, gun-toting teabaggers and a series of incoherent Democratic proposals, disability rights activists present a different--and undercovered--angle on health care reform. The room full of people with chronic health care needs offered a poignant counterpoint to the crazies who have terrorized politicians over the past weeks, people more concerned with obscure and tenuous historical comparisons (circa 1933) than an everyday person's very real problems.
ADAPT was out in full force in orange shirts emblazoned with their trademark logo of a person in a wheelchair breaking free of her chains. Indeed, ADAPT says they secured the meeting after they blockaded a Sestak town hall two weeks back (although I wasn't able to confirm this independently), protesting the fact that the event wasn't accessible. These are amazing political activists, people who excel in chaining their wheelchairs to things in order to get a point across. Read More.
New NCIL “Policy Shop” Ready for Busy Fall Congressional Session
NCIL has gone through staff changes over the last few months. Healthcare Policy Fellow Jason Beloungy was hired for a permanent position as a Policy Analyst in June. NCIL Policy Analyst Elizabeth Leef departed for a position with the Administration on Aging in July. Elizabeth was replaced by Lacy Pittman, who began her position in early August. To help members know which staff person is working on the issues that matter to members, here is a list of the Subcommittees and Taskforces that Jason and Lacy currently staff:
Jason
- Healthcare
- Personal Assistance Services
- Rehab Act/IL Funding
- Employment
- ADA/Civil Rights
- Voting Rights Taskforce
- Judicial Nominations
- ADRC Taskforce
Lacy
- Housing
- Assistive Technology
- Education/IDEA
- Transportation
- Veterans
- ADA/Civil Rights
- Violence and Abuse Taskforce
- Mental Health Taskforce
- SEIU Taskforce
- CANAR Taskforce
NCIL Welcomes new Policy Analyst, Lacy Pittman
Lacy Pittman was raised in Memphis, TN. At a young age, she had trouble paying attention and had difficulty in reading and comprehension which affected her academic pursuit greatly. After being diagnosed with a non-apparent disability, she discovered methods to effectively manage it and these tools influenced and improved her daily life.
Upon graduating from high school, she attended the University of Tennessee (UT). At UT, she was an active participant of several extra-curricular activities like the U.S. Business Leadership Network (USBLN), National Youth Leadership Network (NYLN), UT's Career Services Committee, and Boling Center for Developmental Disabilities (Community Advisory Committee). Also, she completed a 10-week long internship with the United States Department of Agriculture in the Foreign Agriculture Service as an Agricultural Marketing Assistant through the Workforce Recruitment Program. These experiences greatly influenced her passion for advocating for people with disabilities.
After graduating from UT, she worked in banking but in her spare time, she pursued her passion by volunteering for organizations that promote disability awareness. Currently, she serves NYLN as the Advocacy Committee Chair, Governing Board member, and Resource Consultant where she has participates in the Rural People, Rural Policy grant through the W.K. Kellog Foundation, and serves on USBLN’s Student Advisory Committee. By becoming active in these organizations and learning about important issues, she accepted the position of Policy Analyst with NCIL.
Proposal for a Community First Choice (CFC) Medicaid State Option for Inclusion in Healthcare Reform
The core elements of the Community Choice Act (found in Section 101 of the bill) would be structured as an option for states to include in their Medicaid State Plans. The Community First Choice (CFC) Option would provide individuals with disabilities who are eligible for nursing homes and other institutional settings with options to receive community-based services. CFC would support the Olmstead decision by giving people the choice to leave facilities and institutions for their own homes and communities with appropriate, cost effective services and supports. It would also help address state waiting lists for services by providing access to a community-based benefit within Medicaid. The option would not allow caps on the number of individuals served, nor allow waiting lists for these services. A significant enhanced FMAP would be provided, depending on cost, to encourage states to select this option.
Summary of Core Provisions – This is a summary of core provisions that should be included. The complete language should be drawn from S. 683/H.R. 1670. Detailed language can be provided.
- Amend Medicaid to allow state Medicaid plan coverage of community-based attendant services and supports for certain Medicaid-eligible individuals.
- Services under this option would include services to assist individuals with activities of daily living (ADLs), instrumental activities of daily living (IADLs), and health-related tasks through hands-on assistance, supervision, or cueing. ADLs include eating, toileting, grooming, dressing, bathing, and transferring. IADLs include meal planning and preparation; managing finances; shopping for food, clothing, and other essential items; performing essential household chores; communicating by phone and other media; and traveling around and participating in the community. Health-related tasks are defined as those tasks that can be delegated or assigned by licensed health-care professionals under state law to be performed by an attendant. Services also include assistance in learning the skills necessary for the individual to accomplish these tasks him/herself; back-up systems; and voluntary training on selection and management of attendants. Certain expenditures would be excluded, including room and board; services provided under IDEA and the Rehabilitation Act; assistive technology devices and services; durable medical equipment; and home modifications.
- Services must be provided in a home or community setting based on a written plan.
- Services must be made available statewide and must be provided in the most integrated setting appropriate for the individual.
- Services must be provided regardless of age, disability, or type of services needed.
- States will establish and maintain a comprehensive, continuous quality assurance system, including development of requirements for service delivery models; quality assurance to maximize consumer independence and consumer control; and external monitoring; along with other critical state and federal responsibilities/requirements included in S. 683/H.R. 1670.
- Service delivery models must include consumer directed, agency-based, and other models, along with requirements to comply with all federal and state labor laws.
- States would be required to establish a Development and Implementation Council to work with the state in developing and implementing the state plan amendment necessary in order to provide the services. The majority of Council members must be individuals with disabilities, elderly individuals, and representatives of such individuals, and must collaborate with, among others, providers and advocates.
- States would cooperate in reporting to Congress.
- CFC services would not affect the states’ ability to provide such services under other Medicaid provisions.
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August 31, 2009