NATIONAL COUNCIL ON INDEPENDENT LIVING Weekly Advocacy Monitor WhAM! Volume 5, Issue 25 ? July 23, 2007 25th Anniversary Annual Conference Edition Executive Director’s Note: Congratulations to Lee Schulz, of Independence First in Milwaukee, Wisconsin. Lee is the winner of the 2008 Corvette raffled at our Annual Conference and 25th Anniversary Celebration! Lee’s lucky ticket was number 0001 and he purchased and sold the most tickets of any individual. Thank you to all who participated. Your support is sincerely appreciated and will allow us to continue our advocacy efforts for the rights and independence of all Americans with disabilities. 1) What’s Happening Now in the Nation’s Capital? CLASS Act Introduced Action Alert: House Panel Approves Mental Health Parity Legislation 2) National News Fire and Rain: NCIL March and Rally Achieves Success at the Capitol! NCIL Celebrates Members’ High-Impact Advocacy on the Hill Excerpts from Testimony of Andrew J. Imparato from the Hearing of the Senate Health, Education, Labor, and Pensions Committee: The Aging and Disability Resource Center Discussions Rehabilitation Act Strategy Plenary Session House Passes Legislation to Reform Section 8 Housing Program 3) Announcements SAVE THE DATE: Mark your calendars for next year’s Conference. 4) Additional Resources Sample Thank You Letter Position on Long Term Care and Personal Assistant Services 1) What’s Happening Now in the Nation’s Capital? The House of Representatives has been busy. They spent the week of July 16th considering a bill to allow the State Department to rehire retirees to help process a backlog of passport applications; legislation to amend the Federal Deposit Insurance Act to prevent misrepresentation about deposit insurance coverage; a motion to go to conference on recommendations of the Sept. 11 Commission and appoint conferees; and added earmarks to the fiscal 2008 Energy-Water appropriations bill. They also considered the fiscal 2008 Labor-HHS spending bill; a bill that would expand Section 8 low-income rent vouchers, and legislation mandating a withdrawal of most U.S. troops from Iraq by April 1, 2008. The Senate continues consideration of the fiscal 2008 defense authorization bill with all-night debate planned on an amendment requiring an Iraq troop redeployment to begin within 120 days and be completed by April 30, 2008. Senators also set aside time to consider the student loan reconciliation bill. CLASS Act Introduced Senators Edward Kennedy and Tom Harkin, along with Representatives John Dingell and Frank Pallone introduced the Community Living Assistance Services and Supports (CLASS) Act of 2007 (S. 1758), which would create an insurance program for adults who become functionally disabled. The measure would provide a cash benefit to help obtain services and supports, while providing those with disabilities more choices on community participation, education, and employment. Action Alert: House Panel Approves Mental Health Parity Legislation On July 18th, the House Education and Labor Committee passed the Paul Wellstone Mental Health and Addiction Equity Act H.R. 1424, legislation that would require insurance companies to provide equal benefits for mental health and substance abuse treatment to those that are provided for medical and surgical treatment. . The legacy of Wellstone, the late Senator from Minnesota, is his strong and persistent advocacy for people with mental illness.  Two other Committees have not yet considered H.R. 1424, and need your encouragement to do so. Members of the House Energy and Commerce Subcommittee on Health and the House Ways and Means Subcommittee on Health need to hear your support. TAKE ACTION: Your help is needed to pass this bill and enhance the lives of people with mental health disorders. Tell your Representatives to cosponsor and pass the Paul Wellstone Mental Health and Addiction Equity Act H.R. 1424! To locate contact information for your Representative: http://thomas.loc.gov/ To view Energy and Commerce Subcommittee Members: http://energycommerce.house.gov/Subcommittees/health.shtml To view Ways and Means Health Subcommittee Members: http://waysandmeans.house.gov/members.asp?comm=1 2) National News On Tuesday, July 10th, 2007 three hundred people packed the Senate Health Education, Labor and Pensions Committee Hearing, overflow room, and hallways in order to witness and present testimony on the need for an end to the institutional bias in long-term care services. At the same time, 400 NCIL members, representing every state and territory, marched through the streets of downtown Washington, D.C., demanding equal access and justice for people with disabilities (NOW!). Fire and Rain: NCIL March and Rally Achieves Success at the Capitol! Over 400 NCIL Conference attendees marched up Pennsylvania Avenue to the Capitol, chanting, singing, and following marching orders from NCIL ADA/Civil Rights Subcommittee Chair Mark Derry, who brought his bull horn to round up and rally the troops. As the marchers enjoyed lunch under the shade trees, Billy Altom, soon-to-be head of the Association of Programs for Rural Independent Living (APRIL), kicked off the rally by brining out his guitar and leading the crowd in song. In 108 degree temps, numerous past and present Independent Living Movement Leaders spoke to the marchers at the NCIL Rally before Mental Health Parity advocate Sen. Gordon Smith (R-OR) and House Majority Leader Steny Hoyer (D-MD) rallied the crowd. Mr. Hoyer graciously cut short his speech as it began to rain – and thunderstorm! Many overheated marchers savored the rain while others dashed to the US Botanical Garden for cover. Donning wet clothes and soaked hairdos, hundreds of NCIL Conference participants visited their Members of Congress on Capitol Hill to press for NCIL’s Policy Priorities. If you visited your Members of Congress, please do not forget to send them a thank you note. Please tailor the sample thank you letter included under "additional resources" and fax or email it to the appropriate staff person. NCIL Celebrates Members’ High-Impact Advocacy on the Hill The day started early for hundreds of NCIL members who wanted to gain access to the Health, Education, Labor and Pension Hearing on Long Term Care, entitled “Community Services and Supports: Planning Across the Generations”. Senators Kennedy (D-MA), Enzi (R-WY), and Harkin (D-IA) stayed for the entire hearing to listen to stories presented by witnesses. Senators Lisa Murkowski (R-AK) and Sherrod Brown (D-OH) also stayed for a short time to listen to testimony. The panel consisted of six witnesses; Andrew J. Imparato, President and Chief Executive Officer of the American Association of People with Disabilities, spoke on behalf of NCIL, ADAPT, SABE, and AAPD. Mr. Imparato talked about the Community Choice Act, the CLASS Act, and the general problems in the healthcare system. Excerpts from his testimony follow this summary. Other witnesses included Glenda Faatoafe, a home care worker and member of SEIU, who gave a sappy paternalistic perspective on the issue. Monica Herring and her child with a disability spoke about family issues and the need for more community supports for children. Susan M. Daniels, Ph.D., Daniels & Associates, Washington, DC, gave a consumer perspective on limited community service options. The last witnesses were Shawn Griffin, a provider for Developmental Disability Services, and Deborah Fleming, who worked at one time with the Area Agencies on Aging and now works actively with the Aging Disability Resource Centers. This testimony focused on their perspectives as providers for long term care services. Everyone at the hearing spoke of the broken long term care system and the institutional bias within Medicaid. It was painfully evident that there is a huge problem in the current healthcare system and the need for more community-based supports and services are logical for both consumers and providers. NCIL provided written testimony, which is included in full under Additional Resources. NCIL members packed the hearing room. Many were unable to gain access and were directed to the 6th floor of the Dirksen building where the overflow room was located. There, advocates found a room with the lights off and the Television disconnected. Senate Staffers did their best to get the technology working while advocates missed the first half hour of the hearing. Senator Kennedy’s remarks can be found at: http://help.senate.gov/Maj_press/2007_07_10_b.pdf Setting the Record Straight on CCA Cost Estimate Mitch LaPlante, PhD., from the University of California, San Francisco, and Elizabeth Leef made several visits to persuade Senate Finance Committee members to re-score and hold a hearing on the Community Choice Act. Dr. LaPlante’s report on ‘Estimating the Expense of a Mandatory Home- and Community-Based Personal Assistance Services Benefit Under Medicaid’ provides scientific evidence community-based services are affordable. The first meeting was with Senator Jeff Bingaman of New Mexico. The Senator’s legislative assistant agreed the CBO report needed to be re-scored and NM advocates reported the Senator will sign onto the Community Choice Act. Dr. LaPlante and NCIL staff then met up with Kansas advocates while they visited the office of Senator Pat Roberts. Information was given to legislative assistants about the Community Choice Act. The next stop was with Utah advocates. We were able to meet with Senator Orrin Hatch. The Utah advocates and Dr. LaPlante did a great job of briefing the Senator on NCIL’s legislative issues. Senator Hatch said Dr. LaPlante’s report was “the best news he had all day” and left the meeting with the report in his hand, stating that he would read it. Senator Hatch committed to having CBO rescore the bill. West Virginia advocates met with Senator John Rockefeller. The Senator’s legislative assistant agreed that Dr. LaPlante’s report will help move the bill forward. As the advocates made their way through the Senate buildings, they stopped at Senator Blanch Lincoln’s office, where they met up with Arkansas advocates and continued to spread the word about home and community based services. The last Finance Committee member they met with was Senator Jim Bunning of Kentucky. His staff politely nodded her head as we discussed the Community Choice Act. Altogether it was an empowering day. NCIL sincerely thanks the advocates who made our day on the hill a success! Rain or shine, our advocates made an impression. Later that day, NCIL learned that Senate Finance Committee Chairman Max Baucus agreed to hold a hearing on long term care after members visited the Senator’s office following the HELP committee hearing. The Finance Committee will be holding a hearing on Long Term Care Sept. 25, 2007. Anyone that can attend should attend. This is the first time the Community Choice Act formerly known as MiCASSA will be heard in a Committee Hearing! NCIL members should be proud of this accomplishment. Under Medicaid, every state must provide nursing home services, but community-based services remain optional. The Community Choice Act (S.799 & H.R 1621) is about real choice. It seeks to put highly personal choices back into the hands of the individuals directly affected by giving equal access to community-based supports for those eligible for nursing home and ICF-MR services. It also enhances federal matching funds to help states offer greater flexibility in delivering services and supports the way citizens want them. Rather than inventing a new entitlement, the Community Choice Act makes the existing one more flexible. PAS services will be available nation wide to all who qualify. Contact your Senators and Representatives and urge them to cosponsor the Community Choice Act. Visit http://www.senate.gov/ and http://www.house.gov/ to determine your Members of Congress. Senators who signed onto Community Choice Act (S.799) as of July 23, 2007: Barack Obama [D-IL], Joseph Biden [D-DE], Sherrod Brown [D-OH], Robert Casey [D-PA], Hillary Rodham Clinton [D-NY], Christopher Dodd [D-CT], Richard Durbin [D-IL], Tom Harkin [D-IA], Daniel Inouye [D-HI], Edward Kennedy [D-MA], Frank Lautenberg [D-NJ], Joseph Lieberman [ID-CT], Ken Salazar [D-CO], Bernard Sanders [I-VT], Charles Schumer [D-NY], and Arlen Specter [R-PA] Representatives who signed onto H.R. 1621: Rob Bishop [R-UT], Jo Bonner [R-AL], Nancy Boyda [D-KS], Steve Cohen [D-TN], Joe Courtney [D-CT], Danny Davis [D-IL], Diana DeGette [D-CO], Rosa DeLauro [D-CT], Lloyd Doggett [D-TX], Luis Gutierrez [D-IL], John Larson [D-CT], Gwen Moore [D-WI], Christopher Murphy [D-CT], Donald Payne [D-NJ], Janice Schakowsky [D-IL], John Shimkus [R-IL], Christopher Smith [R-NJ], Mark Udall [D-CO], Peter Visclosky [D-IN], James Walsh [R-NY], and Jerry Weller [R-IL]. If your Senator or Representative is not on the list, call them and ask them to sign onto the Community Choice Act. Follow up on hill visits are essential right now. Policy Analyst Elizabeth Leef recently visited Danny Davis’s office and his legislative assistant recalled a NCIL member from Chicago who gave him a copy of NCIL’s 2007 Legislative & Advocacy Priorities. Please give your regional representative your legislative form, reporting the result of your Hill Visits, if you have not done so already, and the NCIL staff will follow up! Advocacy Works! Excerpts from Testimony of Andrew J. Imparato from the Hearing of the Senate Health, Education, Labor, and Pensions Committee: Our current system of long-term care dates back to 1965, when the Medicaid and Medicare programs were first created.1 Not surprisingly, given the origins of these programs, the system continues to exemplify the historically low expectations society has had for people with disabilities for decades. With the expectations for us so low, the mission of the old system was and remains to this day focused on simply maintaining people with disabilities in nursing homes, other institutions, and back rooms, outside of view and away from the mainstream. In 1965, people with disabilities were largely out of sight, because society was inaccessible, both literally and attitudinally. In 1965, states still had involuntary sterilization laws for people with disabilities. Curb cuts were few and far between. There was no Americans with Disabilities Act (ADA). It is 42 years later, and it is an abomination that hundreds of thousands of people with disabilities remain trapped in a broken system that steals lives, saps peoples’ spirit, and enriches service providers at the expense of disabled people and their families. Last September, I traveled to Nashville along with representatives from the U.S. Department of Health and Human Services Office on Disability and the National Council on Disability to meet with a large group of survivors of nursing home and other institutions. All of these individuals had been locked away and had portions of their lives stolen despite their strong desire to live in their homes and communities. Their testimony, which lasted almost 7 hours, was submitted to the Medicaid Commission and is a part of the public record. The testimony also appears as an appendix to this written testimony. As I sat and listened, person after person, men and women, of all ages and races, gave accounts of being left in their own urine and feces, tied to their beds, raped, burned, deprived of food, put in bathtubs of cold water – sometimes as a result of neglect but most often as retaliation for complaining about their inhumane living conditions. It was particularly striking to me how many of the witnesses talked about being forcibly medicated by facility staff as a way to keep them quiet. As a person with a psychiatric disability, I am very aware of how people get forcibly medicated in mental hospitals—a practice which I view as a violation of those individual’s basic human rights. Based on the frequency of the testimony in Nashville, it appears that forced medication is a tool used by institutions of all kinds as a way to quell dissent and sap people’s spirits. Human rights violations are taking place every day in every state in this country, and Congress has repeatedly failed to take decisive action to end the abusive and unnecessary costs of institutional care… Which of you, were you to acquire a disability tomorrow that required long-term services and supports, would favor living in a nursing home or other institution, slowly selling off your life as you know it to live in conditions in which you forfeit your freedoms? Which of you would feel any degree of comfort in the knowledge that your loved one was forced to live in an environment with a legacy of human rights abuses?... We call on Congress to demonstrate leadership and take the first steps down a path of comprehensive reform of long-term care. We urge Congress to pass the Community Choice Act, which would reduce the institutional bias in Medicaid. Pass the Direct Support Professionals Fairness and Security Act, which would provide funds to States for purposes of increasing the wages paid to direct care workers. Pass the Community Living Assistance Services and Supports Act (CLASS Act) as an alternative to the Medicaid “poverty trap.” Direct HHS to enforce the integration mandate recognized by the Supreme Court in the 1999 Olmstead decision, and encourage CMS to create incentives for discharge planners. Passage of these bills and work on these programs will not “cure the crisis,” but it will go a long way in building the necessary groundwork from which to structure future reform. The Aging and Disability Resource Center Discussions The National Council on Independent Living (NCIL) Board President has developed an Aging Disability Resource Center (ADRC) Task Force, which met this spring to develop recommendations to the NCIL Board prior to the luncheon sponsored by AARP and the Administration on Aging, held last week at the NCIL Annual Conference. The NCIL Board reviewed the recommendations prior to the Conference and adopted the following principles regarding ADRCs: 1. ADRCs must embrace our principle of “Nothing About Us Without Us” on a national, state, and local level. This includes a commitment to consumer control, consumer direction, self-determination, autonomy and dignity of risk for all consumers. It also means that policy decisions about serving people with disabilities must include the disability community. 2. All ADRCs must serve seniors and people of all disabilities from day one. Existing ADRCs that have not adhered to this and all key elements will adhere during the next federal fiscal year. 3. All ADRCs must implement the “No Wrong Door” model versus the “Single Point of Entry” model. 4. All ADRC design, development and implementation is required to include a mandatory partnership between senior agencies and ILCs & SILCs, unless one entity chooses not to participate. 5. AoA will work with NCIL for development of guidelines that reinforce this partnership at the federal, state and local levels. John Lancaster, NCIL Executive Director, shared the above principles, adopted by the Board, at the ADRC Luncheon. NCIL members involved or interested in ADRCs, along with the Administration on Aging (AoA), the Center for Medicare and Medicaid Services (CMS), and Area Agencies on Aging (AAA) staff from existing ADRCs were in attendance. Speakers included: The Honorable Josephina G. Carbonella, U.S. Assistant Secretary for Aging (HHS), Percil Stanford, Chief Diversity Officer at AARP, Bob Kafka from ADAPT, and John Lancaster, Executive Director of NCIL. The luncheon was followed by a workshop with NCIL Members on the panel, including Patrick Reinheart of Alaska, Louis Frick from California, Charlie Carr from Massachusetts; and was facilitated by Greg Case from the U.S. Administration on Aging. As many of you are aware, AoA and CMS has awarded funding to ADRCs in forty-three states and territories in three rounds, beginning in October 2003, July 2004, and October 2005. Additional expansion funding has just been awarded. ADRCs are intended to serve older adults and individuals with disabilities. It is the position of NCIL that ensuring cross-disability and consumer control and direction are fundamental responsibilities of all ADRCs. Through a new alliance, NCIL will work with the Administration on Aging (AoA) and the Centers for Medicare & Medicaid Services (CMS) to provide technical assistance to ADRC grantees, designed to assist them in building stronger partnerships across aging and disability networks and introduce NCIL values of cross-disability consumer control and choice. NCIL President Kelly Buckland has now expanded the ADRC Task Force, so that it may continue its work for the NCIL Board and develop a position paper on ADRCs. If you are interested in participating on the ADRC Task Force, please email Elizabeth Leef at the NCIL office at Elizabeth@ncil.org. Region 1 representative Mary Margaret Moore is facilitating this task force. Rehabilitation Act Strategy Plenary Session Moira Lenehan-Razzuri, Legislative Assistant to Congressman Rubén Hinojosa (D - TX) engaged NCIL Conference participants with a discussion about the upcoming reauthorization of the Rehabilitation Act at the Rehabilitation Act Strategy Plenary Session Thursday, July 12th. As Chairman of the House Education and Labor Subcommittee on Higher Education, Life-long Learning, and Competitiveness, Rep. Hinojosa plays a crucial role in the Rehabilitation Act’s reauthorization. Subcommittee staff will draft a bill for consideration later this year. After the Plenary, Moira met with NCIL President Kelly Buckland, Vice President Dan Kessler, Rehab Act Subcommittee Chair Jeff Hughes, and NCIL policy staff members Deb Cotter and Elizabeth Leef, to strategize about NCIL’s advocacy efforts on this front. We were delighted Moira was able to spend so much time answering NCIL’s questions and learning about the Independent Living Movement. We look forward to working with Moira and Subcommittee staff on reauthorization of the Rehabilitation Act. House Passes Legislation to Reform Section 8 Housing Program On July 12th, the House of Representatives passed the Section 8 Voucher Reform Act (SEVRA), H.R. 1851, by a vote of 333 – 83. The bill makes changes to the Section 8 voucher and public housing programs to expand rental assistance opportunities, improve program efficiency, and encourage family self-sufficiency. It also creates 100,000 new vouchers over the next five years. NCIL’s Housing Subcommittee is reviewing the bill and remains concerned about provisions that would make it hard for people to return to work. 3) Announcements Didn’t make it to this year’s Conference? Your Legislators need to hear from you! SAVE THE DATE: Mark your calendars for next year’s Conference. July 21-25, 2008 NCIL Annual Conference Washington, DC We look forward to seeing you there! 4) Additional Resources Sample Thank You Letter Please personalize the BOLDED AND CAPITALIZED TEXT Don’t forget to proof read the final before faxing! DATE The Honorable FIRST LAST NAME OF MEMBER Room ### Senate/ House Office Building Washington, 20010 (Senate) or 20015 (House) Sent via facsimile (202) 22X-XXXX Dear (NAME OF STAFF MEMBER) Senator/Representative (LAST NAME): Thank you for taking the time to meet with me on July 10 to discuss policy issues affecting people with disabilities. [MENTION OTHERS ON YOUR VISIT] JANE DOE, JOHN SMITH, AND I/WE appreciated the opportunity to talk with you about HOUSING/INDEPENDENT LIVING PROGRAM/TRANSPORTATION]. [REFER TO SPECIFIC INFORMATION YOU PROVIDED] We are pleased that the Congressman/Congresswoman has agreed to/is considering signing onto the bill [H.R.###/S.###. This measure would go a long way toward enhance the lives of people with disabilities in [DISTRICT/STATE] as the bill would [CITE TALKING POINTS AND OR YOUR EXPERIENCE]. Please do not hesitate to contact me if I can be of any assistance to you on this or other issues. I look forward to working with you and hope that we can schedule a tour of the Center for the CONGRESSMAN/CONGRESSWOMAN when HE/SHE is in the area. The National Council on Independent Living (NCIL) policy staff, Elizabeth Leef and Deb Cotter, are on hand in Washington working full time on these and other issues. They can be reach at NCIL via phone (202) 207-0334 or email Elizabeth@ncil.org or deb@ncil.org and would be happy to assist you. Sincerely, [YOUR NAME ADDRESS PHONE NUMBERS & EMAIL ADDRESS] NATIONAL COUNCIL ON INDEPENDENT LIVING Position on Long Term Care and Personal Assistant Services The National Council on Independent Living is submitting written testimony to the Senate Health, Education, Labor and Pension (HELP) Committee on community living and long term services and supports. The National Council on Independent Living (NCIL) is the oldest cross disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States. NCIL was established four years after the 1978 amendments to the Rehabilitation Act of 1973. The 1978 amendments added statutory language and funding for the formation of Centers for Independent Living. The Executive Directors of the newly federally funded CILs met regularly with Rehabilitation Services Administration (RSA) to discuss issues related to the development and expansion of CILs nationwide. Believing that the views of CIL consumers and people with disabilities, as a whole, were not being heard by the federal government, the Administration or the Congress, the CIL executive directors worked to organized and establish the National Council on Independent Living - an organization governed by people with disabilities advocating for the development and expansion of a nationwide network of centers for independent living. We support Insurance Reform acts such as the Class Act, which would assist people with disabilities who need long term assistance or supports by providing a flexible cash insurance benefit that could be used creatively to purchase services, supports and technology. Beneficiaries would choose how to best meet their own needs. NCIL applauds the creative approach of the bill in addressing the issues around long term care services. We believe an insurance program that is available nationwide and that is affordable and not tied to poverty and unemployment is a laudable goal and a much needed piece of the long term service puzzle. NCIL also strongly supports The Community Choice Act of 2007 (S.799 & H.R. 1621) by Senator Tom Harkin (D-IA) and Representative Danny Davis (D-IL-7th). NCIL endorses the Community Choice Act of 2007 because the bill addresses provisions that would provide a range of community-based supports that would include activities of daily living such as eating, toileting, grooming, dressing, bathing and transferring; and could include meal planning, shopping and preparation, financial management, and household chores. The legislation also addresses hands-on assistance, supervision and cueing.  Supports will be based on a functional needs assessment and all services are furnished in accordance with a plan agreed on by the consumer. The Community Choice Act of 2007 will provide many people with disabilities the opportunity to choose where and how they receive personal assistance services in their homes and communities across the nation. The balance of our testimony will acquaint you with the National Council on Independent Living, our membership, activities and commitment to ending the institutional bias over the last twenty years. We will also explain our principals and goals for a national system of consumer control and home and community based services. In terms of long term care policy, instead of “liberty and justice for all” the situation is liberty and justice for some depending on your age or the type and severity of your condition and the budget cycle of the state you happen to live in. It is shameful that people with disabilities who need long term services and supports have more freedom in Colorado than in Tennessee. The happenstance of where you live should not determine your very ability to enjoy your home and community, yet this is absolutely the case today in America. There is a strong historical linkage between NCIL and the struggle for people with disabilities to live in their own homes and communities and not in institutions. In fact, the definition of a CIL found in federal law (Rehabilitation Act of 1973, as amended) is that a CIL must be non-residential (not located in an institution or long-term care facility) but, rather must be in the community at large. NCIL’s CIL members remain at the forefront of the de-institutional movement. CILs are required by law and committed by philosophy to serve people with all and any type of disability regardless of age. In the past ten years, because of these legal and philosophical commitments, many have become providers of personal assistance services, which are controlled and managed by the individual with the disability. In fact, the concept of having in-home, personal assistance services controlled and managed by the person with a disability was first promulgated and practiced by one of the founders of the independent living movement and founder of the first CIL in Berkley, California, Ed Roberts. This concept, now well known as “consumer control” of services, is promoted by NCIL’s CIL and SILC membership nationwide. Allowing this option of consumer control within the provision of Medicaid Waiver attendant services is now becoming widespread. CILs were the first type of Medicaid Waiver provider to push for and put into practice consumer control within these programs that are so important to the independent living and the very liberty of thousands of people with disabilities of all ages today. This direct involvement of CILs with the Medicaid personal attendant service programs has caused a major paradigm shift in the nature of these programs nationwide. This involvement has caused the federal and state agencies who oversee the programs to fundamentally change the way the program recipients, people with disabilities, are viewed. Recipients and independent living advocates are now much more involved in the planning, start-up and delivery of the services provided, including direct control and management of the day-to-day services. This increased involvement in all aspects has strengthened the services and improved the quality of outcomes of the program, including employment of the recipients and others with disabilities. Now, more than ever, people who use personal attendant services are working and remaining at work. The rise in employment of people who receive home and community services, especially consumer controlled services compared to the stark unemployment of people residing in institutions must be noted, emphasized, and nurtured in our nation’s long term care policies. The leadership provided by CILs in provision of, and advocacy for, consumer controlled personal attendant services has given NCIL a wealth of direct experience and observations to share. These experiences and observations range from the wondrous and appealing to the woeful and appalling. Approximately 5.4 million American adults living outside an institution require some assistance from another person with daily living tasks such as dressing, eating, toileting, housekeeping, remembering to take medications, balancing a checkbook, and other everyday activities. There are 2.7 million people needing such assistance have unmet needs.i While progress is slowly being made to change institutional bias, national long-term services policy remains firmly biased in favor of institutionalizing people who need such assistance rather than assisting them in their own homes and/or communities. This bias is reflected in the fact that 72% of the $82.13 billion spent on long term care services goes to institutional services, while only 28% funds community services and supports.ii Analysis estimates of 2002 costs, HCBS waivers produced a national average public saving of $43,947 per participant when comparing expenditures between Medicaid HCBS waivers and institutional care.iii In 2001, ‘The New Freedom Initiative’ (NFI) was announced as a cross-governmental policy and funding initiative to remove barriers to community living for people with disabilities and to support efforts to comply with the Americans with Disabilities Act (ADA). Later in 2001, an Executive Order outlined the Federal Government’s commitment to community-based alternatives to institutional care for all people with disabilities. Federal agencies were directed to work with states to ensure compliance with the ADA integration mandate that was reinforced by the Olmstead ruling.iv CMS has encouraged states to rebalance long term care (LTC) systems and enable money to follow the person through grants to states as well as making policy changes, providing guidance and proposing legislation. Unfortunately, even with the resources, funding opportunities and technical assistance from CMS, many states have not made meaningful LTC system changes and the institutional bias remains prevalent. Many states that have applied for HCBS waivers have long waiting lists for PAS programs. State officials report many groups are not being served, such as traumatic brain injury, HIV/AIDS, or mental illness. The cost of unmet need for Medicaid HCBS is estimated at $1.9 billion for those living alone and $4.7 billion for those living with others. v The NCIL asserts the institutional bias on the part of the federal government and state governments must be reversed and that people of all ages with all types of disabilities must have the option of obtaining assistance with daily living in their homes and communities through a national consumer controlled personal assistance service program. Americans with all types of disabilities and all citizens of the United States deserve no less. NCIL believes that a national personal assistance service program must have certain characteristics to most effectively and efficiently meet the needs of people with disabilities in their home and communities, that a comprehensive range of services must be available for an effective, efficient personal assistance service program. Personal assistance service, along with assistive technology such as wheelchairs, text readers, and hearing aids, enable people with disabilities to participate in activities at home, at work, and in the community. Personal assistance service coverage must extend to people of all ages with all types of disabilities including cognitive, sensory, mental and physical disabilities and that eligibility criteria must not discriminate based on age, type of disability and/or any other factor unrelated to need. NCIL’s position is that individuals must be eligible for a national personal assistance service program if they experience a functional disability of a temporary or permanent nature resulting from injury, aging, disease or congenital condition which requires personal assistance services. Eligibility criteria must be developed that do not exclude people based on age; type of disability; onset of disability such as congenital, injury, disease, or later age onset; and health, family status, race, national origin, cultural background, religion, gender, sexual preference and/or geography. Eligibility criteria must not include disincentives for employment and/or marriage. Eligibility must not be based on income factors. Although, cost sharing is acceptable based on a sliding income. No person must be forced into or kept in an institution because of the denial of Personal Assistance Service. NCIL believes that the views of personal assistance service users must be paramount in the design, delivery, and evaluation of a national personal assistance service program. NCIL believes that whatever national program design and funding mechanisms are employed, states should be required to adopt the definition and provide the basic services, program models, coverage and eligibility criteria, governance mechanisms, and grievance and appeal procedures cited in this position paper in order to provide uniform coverage for people with disabilities across the states. NCIL further believes that a gradual phase in of a personal assistance service program would be desirable in order that a personal assistance service infrastructure can be developed to meet the demand. NCIL believes that financing mechanisms and regulations for a national personal assistance service program should not in any way reflect a bias toward institutionalization and away from Home and Community Based Services. Cost sharing and/or tax credits must be part of a national personal assistance service plan based on a sliding scale relative to income, but with a cap on out-of-pocket consumer expenditures at a percentage of income and/or on tax credits. The families of children who receive personal assistance service benefits must be treated the same as direct personal assistance service users in terms of cost sharing and/or tax credits. There must be no unfavorable differential federal match requirement relative to any other long-term service programs. Any benefits, whether direct vouchers/cash or not, derived by personal assistance service users must not be treated as disposable income nor counted as income for the determination of eligibility for other statutory benefits/services. Federal and state governments must clarify tax withholding and personal assistant benefit requirements for personal assistance service users and providers. Long-term services insurance reform should be undertaken in conjunction with a national personal assistance service program which addresses standardized benefits packages and the elimination of pre-existing condition exclusions. No one who receives personal assistance service benefits at the time of adoption of a national personal assistance service program must lose the benefits they are receiving. NCIL believes that a national personal assistance service program must include a uniform appeal/grievance procedure independent of funders, providers, and assessors which has an expeditious time-line and which provides expenses for the use of advocates and/or legal counsel by personal assistance service applicants/users or their families. We must begin to end the disability bias by eliminating the institutional bias. Simply put, we have to stop locking people away from home, friends and family just because they are disabled. Ending this bias will make a better and richer society because history has shown that ending bias and segregation against people, any and all people, is good for us all. NCIL stands ready and willing to assist the Senate Health, Education, Labor and Pension Committee. Elizabeth Leef, our health policy analyst is available for questions. She can be contacted 202-207-0334 or Elizabeth@ncil.org. Thank you, Kelly Buckland John A. Lancaster President Executive Director 1 Hearing on Long-Term Care and Medicaid: Better Quality and Sustainability by Giving More Control to People with a Disability Before the Subcommittee of the House Committee on Energy and Commerce, 109th Cong. (April 27, 2005) (testimony of Mark B. McClellan, MD, Ph.D., CMS Administrator, Centers for Medicaid and Medicare Services). i Mitchell P. LaPlante, Ph.D., et al, Unmet Need for Personal Assistance Services, University of California, San Francisco, Center for PAS, 2004 ii 2002 Medstat data iii Kitchener, M., Ng, T., Miller, N. & Harrington C. (2006). Institutional and community-based long-term care: A comparative estimate of public costs. Journal of Health & Social Policy, Vol. 22(2) 2006. iv Martin Kitchener, Micky Willmott and Charlene Harrington, Home and Community-Based Services: Federal Funding to States. UCSF National Center for Personal Assistance Services. v Harrington, C., Newcomer, R., LaPlante, M., Kaye, S., Stoddard, S., Kitchener, M., & Oxford, M. (2004, November 15). Center for Personal Assistance Services. Presented at the National Association of State Medicaid Directors Fall 2004 Annual Meeting hosted by Held in Cooperation with the Centers for Medicare & Medicaid Services (CMS). ?? ?? ?? ?? 8