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National Council on Independent Living |
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Not Just Responding To Change, But Leading It! |
CIL and AAA Areas for Collaboration (New!) There are key issues that Centers for Independent Living (CILs) and disability groups are very active in advocating for change. Most if not all these issues are the same for the Areas Agencies on Aging (AAAs) and aging groups. It is these similarities that are the key to these collaborative partnerships. The following are 13 examples that you can use as a foundation to build upon. Transportation Affordable, available and accessible transportation is needed for the growing aging and disability populations, especially those who are no longer able to drive. Both groups experience a loss of independence when they can no longer drive themselves to do shopping, visit family and friends, do recreational activities, or go to medical appointments. The demand for affordable, available and accessible transportation is only going to increase. There is a need to understand the procedures to utilize public transportation or to even know about the availability of public and/or private transportation services in their areas. Depending on the area and the services that both sides provide, there is an opportunity for both sides to work together to develop a program to meet all the needs. Employment Seniors and people with disabilities are having to work due to many factors; some out of choice, others out of need. As we age, age related changes (physical, sensory, mobility), can affect our ability to complete work tasks. CILs have the experience working with individuals through vocational rehabilitation in providing work place accommodations for those in need. CILs can apply this knowledge by assisting the older employee and their employer with ways to make work place accommodations, provide names of contractors and vendors who can provide the modifications that may be needed. Jointly both can examine the current programs that provide these services to ensure they meet the needs of elderly consumers. Both sides can work together to provide each other with referrals for services. Emergency Preparedness All too often in emergencies, the concerns of people with disabilities and seniors are overlooked or put aside. In areas ranging from the accessibility of emergency information to the evacuation plans, great urgency surrounds the need for responding to these concerns in all planning, preparedness, response, recovery, and mitigation activities. Prior planning and collaboration between both groups will help to prevent poor performance. Education on how to shelter in place may prove to be beneficial in the event seniors and people with disabilities are unable to evacuate. Disability and aging organizations have unique and credible connections with the people they support and expertise with delivering services to them. While their unique skills and understanding are invaluable they are an often- overlooked resource for emergency planning, preparedness, response, recovery and mitigation activities. To correct this situation, disability and aging organizations must be included as partners in working with local, regional, state, and national public and private response agencies. This collaborative partnership can take steps towards establishing a collaborative relationship with emergency management agencies to ensure that there is understanding and clarity as to the concerns and needs of people with disabilities and seniors are effectively addressed in times of disaster. Housing As people age, they may often acquire disabilities or limitations that interfere with aging in place successfully. Both can work together to intervene and assist older adults in remaining independent in their own homes. It is important that each agency is familiar with the other and aware of the services each provides to allow each to make appropriate cross-referrals. Each has expertise that benefits older adults; the AAAs are familiar with challenges an older adult encounters and CILs are knowledgeable in promoting independence. Together they can work to help older adults remain independent in their homes by referring or providing personal care, housekeeping services, environmental adaptations, support groups, caregiver classes, help to obtain and learn to use assistive devices, and peer support. By working together, more senior may remain in their homes and avoid hospitalizations that may lead to nursing home placement. Accessibility (Universal Design and Visitability Guidelines) Universal design and visit ability guidelines benefit people of all ages regardless of functional ability or disability. Both groups can support these concepts by working together to increase awareness among the public, community leaders, architects, contractors, and building associations. Together, they can do public service announcements about these concepts, and attend state legislative meetings to advocate for change. Community Education & Awareness (regarding elders and people with disability rights, etc) According to many AAAs, they have not been strong in self-advocacy, community awareness and education regarding their rights. CILs and disability groups have a long history of expertise working to increase the rights of people with disabilities. CILs can provide awareness and etiquette training to staff, caregivers, Meals on Wheels personnel, home health and personal care aids and to employers. CILs can offer self-advocacy training to senior consumers to help them obtain the services they need. Together each group can jointly provide education and awareness about disabilities to the community. DeInstitutionalization Typically AAAs do not have much experience with this process. Historically, the approach used by the aging network for providing services has been medically based and professionally directed. The consumer was told what services they needed and which one would be paid for by the insurance, Medicaid, or Medicare. Now with “Money Follows the Person” and “Community Choice” grants, some healthcare professionals and service providers will need time to get used to the transition. CILs can be instrumental in assisting in this transitional phase with the skills and talents of their peer supporters and independent living specialist and with their independent living philosophy. CILs can provide valuable information/training on the concept of consumer choice/consumer directed services. This will help the aging network service providers to fully understand the positive impact these concepts have on consumers and their well-being. Services that are needed by the consumer will be utilized more effectively than those they do not want or feel they need. Training for consumers about this process will help them become more involved and empowered with the decision-making process regarding their services. Consumer training about available services, how to obtain them, etc. should help to relieve the burden of care by the AAAs. With funding for services becoming more difficult to obtain and personnel cutbacks, CILs can promote their existing services or develop new programs that will directly benefit the aging population. Aging with Disability Issues With the demand for services increasing, it will be difficult for the aging network to accommodate this increase alone. Assistance form outside agencies will be needed, CILs can be instrumental in providing services to this population. By networking together, CILs will better understand the specific needs, problems and solutions that are unique to seniors. By working together for better services and programs, advocacy, funding, etc. will provide a strong voice and presence to support government policy changes to better quality of life of all people with disabilities regardless of age. Assistive Technology Acquisition (for consumers) CILs are knowledgeable about assistive technology and can provide information and training in the obtaining and the use of said technology. Some aging groups may not be aware of the various technologies that can help them improve, restore or maintain their functional abilities. Many service providers outside the rehab personnel are not aware of these technologies and how to acquire them for their consumers successfully without payer denial. This is where CILs can offer training sessions to increase the aging network’s knowledge about various technologies and how to obtain them. Home Safety & Modification These issues are mutually important to both groups consumer base. Working together to promote home safety and modifications will provide a stronger voice to public and government officials to encourage policy change to address these issues. Collectively, they can work together to educate the public and advocate for the consumer regarding these issues. Assisting Caregivers More and more grandparents are working longer and becoming the primary caregivers for their grandchildren. They are raising their grandchildren for several reasons: the grandchild is disabled, parents are deceased, incarcerated or financially unable. Most aging agencies have experience with elderly consumers needs but not children, particularly those with disabilities. CILs are experienced with working with all ages, and most have experience working with the young and disabled. As older adults begin to decline in functional status due to age-related changes and/or chronic conditions, they will need assistance maintaining their own functional status while continuing their caregiver roles. CILs can offer training in assistive technology and acquisition, and information and referral to providers of home modification, respite care, day programs, and personal assistance services to be an added support for grandparents in caregiver roles. Voting As an American we each have the right and responsibility to cast our votes and participate in the governing of our communities. Every election affects each one of us. The policies developed and implemented by those we elect impact us every day. Political candidates often talk about many issues that affect us such as quality affordable health care, accessible and affordable housing, affordable and accessible transportation, employment and education. Even though this political acknowledgement is progress, our combined issues are often not in the forefront of many political campaigns. Together we represent a wide range of common values and issues important to many Americans. We are often fragmented over issues and fail to see the greater impact of being united. We need to unify and not allow inner diversities to hinder our ability to affect political outcomes. Politicians need to see us an influential voting group. Together we can become the largest voting group in America, and have the potential to influence issues, demand attention from political candidates, and even determine the outcome of elections. If we want to be counted, have equal access, and have the right to maintain our own individual choices in daily life, then we should follow those immortal words of Justin Dart, father of the ADA; “VOTE AS IF YOUR LIFE DEPENDED ON IT--BECAUSE IT DOES”. Collaborative writing grants for funding additional services Rather than competing for funding, work together to develop grants that would meet a dual purpose of helping people of all ages with and without disabilities. By talking to each other we can find out what areas need to be addressed to meet the needs of our consumers. We can explore any private organizations that would support joint efforts to serve multigenerational groups. By providing additional letters of support, both groups may have a greater chance of obtaining funding for these purposes.
Comparative Analysis of Services/Programs Offered by Area Agencies on Aging (AAAs) and Centers for Independent Living (CILs) (New!) The following will compare the services offered by each agency. CILs will find that there are many similar services offered by the AAAs. In their local areas, AAAs contract out many services to other providers. CILs have a great opportunity to become contract service providers. CILs experience and success in providing services to people of all ages with disabilities can be a valuable asset to the AAAs along with providing additional financial support to CILs. CILs and AAAs need to become aware of one another’s organizational structure, purpose and services in order to develop a working collaboration. This is as easy as a phone call to the Executive Director of either agency in your area.
Areas of Programmatic Similarity: Both may assist their perspective participants in the following:
Both can work in the following areas:
Areas of Programmatic Differences: Population Served: AAAs: Elderly persons, age 60+. Those most in need (frail, lives alone, low income status) Identification/Label of Person Served: AAAs: Client, Patient, Resident Organizational Structure: AAAs: Professional Control/Directed Community & Self Perceptions of the Person with a Disability AAAs: A person who, as a result of an impairment, is unable to participate in a variety of roles due to functional limitations - needs rehabilitation, personal assistance or other services. Nursing Home Placement AAAs: person with impairment referred to nursing home when believed no longer able to live alone safely or needs skilled care. Service Provision AAAs: Provide direct services and contract with local providers to furnish other professional services in the community for elderly consumers; a rehabilitative approach. Housing AAAs: Assist independent elderly to obtain housing designed to accommodate their needs and preferences and alternative community-based living facilities that bridge the gaps between independent living and nursing homes. Agency Service Providers AAAs: Healthcare professional staff/case managers Service Plans AAAs: Case manager establishes the plan of care.
What the ADRCs Thought of YOU! The following notes were taken by ADRC participants in the NCIL / ADRC Luncheon at this years Annual conference. They also appear in PDF and Word format on the ADRC website. What kind of partnership does the ADRC have with CILS in your states? In what ways does the partnership work well? • Involving local partners who are familiar with consumers and their communities Are there areas in which the partnership could be improved or strengthened? • Several grantees noted that training in areas of sensitivity and terminology would help strengthen relationships What did you think about today’s sessions at the NICL conference? Did you hear anything that you thought was particularly useful, interesting, or surprising? • A common theme that emerged is the need to clear up misconceptions about the aging network and establish mutual respect. Did you make any new connections with people in your state at lunch? • Most states noted that they had already partnered with the CILs in their states or were getting ready to do so. What opportunities for collaboration did you identify? • The aging network has political connections and can use these connections to advocate for the disability community NCIL / ADRC Luncheon Transcript: CART and Interpreters >> John Lancaster: Folks, hello, good afternoon. If I could start getting your attention and ask everyone to be seated, please. And I have a couple of a announcements: A couple of announcements. Thank you for quieting down. First of all, we have interpreters available at this event beside the interpreter up here. If you would like an interpreter at your table, please raise your hands so they know where to go. Okay, thank you. Another housekeeping well, it's not a housekeeping matter; it's a promotional matter. Don't forget the raffle, we have 50/50 cash raffle tickets out there, and don't forget we are raffling off a brand-new Corvette, and the odds are really good at winning. And if you haven't bought your ticket yet, now is a great opportunity. Outside the door at the NCIL table you can buy a raffle ticket. I want to start by letting you know who I am and then our guests will be introduced. We are very honored to have with us a couple of very important guests who will be introduced in turn, but we have with us the Assistant Secretary for Aging over at HHS, Josefina Carbonell, and we are thrilled to have her with us today. >> John Lancaster: And we have Dr. Percil Stanford, a very, very Senior Vice President at AARP in charge of their diversity efforts, and we are thrilled to have Percil with us, thank you, Percil. >> John Lancaster: And then for those of you in our community, in the independent living community, you all know the gentleman next to me, and it's a real honor to be sitting next to my dear friend and a real leader, the head of ADAPT, Bob Kafka. >> John Lancaster: So I want to start this meeting with a few comments, and there's probably many people in this audience that I should recognize, but I do want to acknowledge the presence of our President from the State of Idaho, our dear friend and the President of NCIL and the Executive Director of the Idaho State Independent Living Council, Kelly Buckland. Kelly?
>> John Lancaster: Congratulations on your new appointment over at HHS, leaving NIDRR to go over there, and so we Um, I would like to start by acknowledging the department of Health and Human Services , particularly the Administration on Aging for their working with us in and collaborating with us and indeed, reaching out to us. Greg Case gave me a call after we had worked together and talked together back on that I think the White House Council on Aging and the things leading to up that, in identifying a problem that we had already identified at NCIL, and that is that we really were not getting the type of cooperation that we wanted and needed between the ADRCs and the Independent Living Centers around the country with some exceptions. There are some states where our state Independent Living Councils and our Centers for Independent Living are very much engaged in the process that is being developed here throughout the Administration on Aging, these ADRCs. Well, that the aging and disability we believe that the Aging and Disability Resource Centers are an important vehicle, and we believe that the independent living program ought to be at the table. And for those of you in the Administration on Aging who don't and for those of you with the ADRCs that don't know much about the independent living program, we have been around since 1978 when the program was created as a part of the Rehabilitation Act and it is Title VII of the Rehab Act, and there are 334 Centers for Independent Living around the country and another oh, 120 or so what we call state funded, State Centers for Independent Living. And these Centers for Independent Living are all supporting and empowering people with disabilities to live independently in their own homes and in their own communities in an inclusive way and, ideally, in a very productive way with a job and with access to transition, housing, health care and the supports that they need to be truly independent in the community personal care attendant whatever the supports might need to be. All of these centers are owned 501(c)(3)'s and are owned and operated and staffed by people with disabilities themselves. At the core of everything that we do is consumer choice and consumer direction of their own lives in the programs that seek to support and empower them. That in a nutshell is what we are about and what our services are about. We are concerned about the aging and disability resource centers and have recently developed some principles that we would like to see the ADRCs embrace. And the first of those principles is "nothing about us without us." And this includes a commitment to consumer control and consumer direction, self-determination, autonomy and dignity of risk for all people, and for the consumers of services. It also means that policy decisions about serving people with disabilities must include the disability community, and in particular, Centers for Independent Living that are on the forefront of really supporting people and keeping, maintaining, and developing control over their own lives. Second, we believe the ADRCs must serve seniors and people with all disabilities from day one, not just a segment of the disability community, but everyone, the full gamut, whether it's folks with mental health disabilities or folks with a developmental, a sensory, or a physical disability. Third, we believe that ADRCs should be implemented a no-wrong-door policy and model as opposed to a single-point-of-entry model. People simply need to have whatever available access there is to get into the system. There should be no wrong door into the system. All Aging and Disability Resource Centers ought to be designing, developing and implementing things that include a mandatory partnership between the senior agencies and the centers for independent living and the state Independent Living Councils, unless for some reason one or the other don't wish to participate, but we doubt that will be the case. So we feel strongly about that. I would be remiss if I didn't say that this luncheon and a lot of this conference has been made possible by the American Association of Retired Persons . And we are also thrilled with the commitment and the support for our issues that we are starting to see from AARP. We are beginning to develop an effective working relationship with AARP. We've been talking and I know one of Dr. Stanford's staff is here, Brewster Thackery. He has been very involved in our issues and extremely supportive of the work that the Nation Council on Independent Living is doing here in Washington and of disability issues in general. We appreciate that work and the approach that AARP is starting to take in this area. And there is a man who I think that is, in part, quite responsible for this and that is Dr. E. Percil Stanford. He was named Chief Diversity Officer for AARP in December of 2005. Percil attended the first White House Conference on Aging as an undergrad studying sociology and democracy up in Baltimore. He is a professor emeritus at San Diego State University and a former president of the American Society of Aging. Dr. Stanford has worked at the U.S. Administration on Aging, the office of the Secretary of the U.S. Department of Health, Education and Welfare and has worked in both houses of Congress, but the real thing that I want to say about Dr. Stanford before I give him the microphone is that I have had the honor to work with him on several occasions now and be in meetings with him, and he impresses me as a man who treats anyone and everything with dignity, with respect, and in a way that is truly kind of empowering and inspiring and totally respectful. So I want to thank Dr. Stanford for his support of what we are doing and to give the mic to you.
AARP is really proud to help sponsor this 25th anniversary conference because it really symbolizes solidarity and symbolizes that we can work together in many, many ways. Another important element here is that it's not only a not-for-profit segment of our communities coming together, but it's also a government segment coming together to make some things move ahead. People are asking perhaps why AARP, for example, is interested in and is involved in this particular endeavor? It's no secret that all of us, as we age, will most likely experience some kind of disability. And our organization is beginning to really pay attention I should say more attention to that fact than ever before. It is true that if we don't acquire a disability ourselves as we age, we will certainly know someone or be responsible for the care of someone who has, and so that makes it doubly important for us to be involved. This is not only a symbiotic relationship between AARP and others, it's a commitment, a commitment that we not only have to talk about in terms of saying we are committed but we have to really underscore it with action. I want to say that again. We have to underscore what we say with action. >> Dr. Percil Stanford: So it's not only how we join hands, but it's the when. And the when is now. It is now. >> Dr. Percil Stanford: So we want to make it possible for everyone to stay in their homes and to stay in their communities. >> Yeah! >> Dr. Percil Stanford: staying in your homes and communities, living in environments and areas that are desirable and of quality. Of quality. >> Dr. Percil Stanford: So that leads me to really talk about something that we are doing and many of you have joined hands with us in doing, and that is the campaign that we are calling "Divided We Fail." And turn that around and we are saying that together we succeed. This is important for us. We are focusing on health and focusing on lifetime financial security. With those two, we can do a lot of things. And it's going to take a lot of us, many of us to make that happen. Most of us know that one major illness or injury can move us close to or into financial ruin, quickly and easily. So when we focus on these two areas, it's our feeling for the 46 million Americans who are uninsured for example, 20% skip treatments, tests or prescriptions because of the costs. We are also at a point in our history where pension plans, for example, mean little, because they are daily, by the minute, practically, being ignored, so our financial security is really at risk. So just to end my comments, I want to say we are proud to be a supporter of the disabilities work, proud to be working with these gentleman to my left and with Josefina Carbonell our Honored Secretary of Aging and many other partners that we have out there. >>Dr. Percil Stanford: That was one of my greatest pleasures and that is to introduce the lady to my left. Somebody sent me a lot of notes and some things to say about Josefina and I was told and I had already come to the conclusion that I would not use those. This is my day for not using.
>>Dr. Percil Stanford: We talk about the president and what he does or doesn't do, but let's give him credit for what he does right here. Appointing the right person here. So she has been the longest serving assistant secretary for aging, and I think that's a plus because it has given all of us an opportunity to join forces, to work with her, to make some of her dreams come true. So it's my pleasure then to introduce to some of you but just to say hello and welcome to Josefina Carbonell. >>Josefina Carbonell: Percil, of course, is a dear friend and colleague and we've been in the trenches together, Percil, and we are delighted to be here. Good afternoon, everyone. We also have our aging network, ADRC representatives from throughout the country here today and it is a historic time for all of us. Personally it's historic because we're finally making sure that there's cohesiveness and there's true collaboration and true movement forward together. So I am very excited to be here with you this afternoon and delighted to talk and discuss some of our priorities and where we're going. But before I do that, I have a special honor today on behalf of Secretary Mike Levitt to introduce and acknowledge or new college into the HHS the Department of Health and Human Services family, a dear friend and incredible advocate. On July 2nd, Steven James Tingus was appointed for secretary of disability and long-term care policy within the Office of Assistant Secretary for Planning and Evaluation at HHS. Of course, Steve possesses a deep commitment toward improving the health education and employment and community living options for persons with disabilities of all ages. Previously as John mentioned he served as the director of the national institute on disability and rehabilitation research, NIDRR within the Department of Education. Please join me in welcoming, a round of applause our new deputy assistant secretary for disability aging and long-term care policy. >>Josefina Carbonell: Thank you. Welcome, Steve. I would like to spend this time with you sharing some of our efforts at the U.S. Administration on Aging to promote more consumer centered systems of health and long-term care supports and how we hope these efforts will promote increased collaborations across aging and disability networks. I'm so pleased to be sharing the podium this afternoon with my colleagues Percil Stanford and Bob Kafka before such a large group of disability and aging advocates. It is you in this room, our communities, including Percil and Bob, that are out there on the front lines and advancing changes in our health and long-term care support system on behalf of people with disabilities of all ages. I especially want to congratulate the National Council on Independent Living on their 25th anniversary and thank them for bringing together the disability advocates from across the country and the aging and disability resource centers grantees in this form. The meetings over the next two days will provide an incredible and wonderful opportunity to share your expertise, your wisdom and council and learn new things, new way to work together on behalf of people with disability of all ages. There's so many new and exciting challenges and opportunities changing really the landscape of how we do business in the area of health and long-term care supports and services. And perhaps our greatest opportunity today is to advance our common mission, to make sure that our country's overall system of supports and services becomes more responsive to the needs and preferences of people with disabilities. Working together, there's much more that we can do to ensure greater consumer choice and control. Let me offer a brief background, if I may about the aging services network. I've had the privilege of working with the aging services network for a few years now. I don't want to date myself, but... a network that was originally envisioned in 1965. Let's just say I've grown older alongside the older ... The framers of the act really anticipated this growth in our older population and they charted out an incredible vision for a nationwide network of public and private agencies and organizations at the national state and community level. Organized around the common mission and goal of ensuring the dignity and independence of older people. The older Americans act charges us with a specific responsibility tore serve as a principal advocate for older people and that's an important piece in the authorizing language because it authorizes not only the assistant secretary for aging but most importantly each and every one of our advocates and local providers whether it be at the state unit on aging, at the air agency on aging to be key advocates on behalf of older Americans, and that's very important. Keep that in mind as we go along. Not only providers, but advocates. And, of course, as advocates we have to make sure our nation systematically coordinates the supports that enable older individuals to remain independent in their own homes and communities for as long as possible. The Aging Network is making a real difference in the lives of millions of people across the nation and it has a proven capacity to work with our health and human service partners to bring together policy makers, providers, advocates and consumers to modernize and improve the way this country provides long-term supports and services. The positive impact of the disability community in this country including the work of the National Council of Independent Living is very well known. You have been trailblazers in creating real systems change. And I don't want to pun with that, but it's real systems change and it starts you're right, Percil at the community level. At the state and the federal levels. And in making those systems more consumer centered. Much of the progress in this country has made really putting consumers in the driver's seat when it comes to controlling the services they receive is directly due to the hard work of disability advocates like yourselves. One of my greatest hopes is in working with centers for Medicare and Medicaid services is to create the Aging and Disability Resource Center initiative to see that aging and disability network professionals work collaboratively. >>Josefina Carbonell: And most importantly, to ensure that the greatest impact is really born at the local level at the individual level with disabilities of all ages. Aging and disability networks working together in partnership means sharing a vision, coordinating our approaches, collectively advancing our agenda and certainly promoting the independence and control for people with disabilities of all ages. But we can make even a greater impact at all levels, federal state and local level if we work and continue to work together rather than alone. Together we need to advance our common agenda to realign existing funding sources so that more of our public and, yes, private dollars are directed to affordable cost-effective and consumer centered home and community-based supports. >>Josefina Carbonell: My mission, if I may say, since arriving at the administration on aging has been to make long-term care more centered and responsive to the needs of the individual, and trust me it has not been easy. Towards that end, we have developed a strategy to advance meaningful and important changes in health and long-term care support systems. Changes that will help rebalance long-term care and improve the quality of life for millions of people. Our strategy really encompasses three main goals. One, making it easier for our individuals, our families and others to learn about and access existing services and supports. We also want to make sure that we enable older individuals to have ready access to lowcost prevention programs that have proven to be effective in reducing the risk of disease, disability and injury. We also want to provide people more flexible options, more consumer directed options to people at the highest risk of nursing home placement so they can remain at home. We call this our overall strategy the choices for independence. Giving Americans what they ultimately want. And it builds on the best practices of strategies that we've pulled right out of our respective networks, both the aging and disability networks. Best practices and strategies have been implemented in many parts of the country and that we are now replicating through our discretionary grants program within the Department of Health and human services and our parts at the department. I want to spend a few moments talking about our efforts to help individuals learn about and access services through the CMS and AoA research center program, but let me begin by briefly outlining the other two components of our strategy. Prevention and the flexible service options. One systemwide change, the choice for independent advances is to make it easier for people to learn about and take advantage of really low-cost, evidence-based science-based prevention programs that can improve their health and quality of life. These interventions involve simple tools and techniques that can be deployed by service providers at the community level to assist individuals in such areas as false prevention, chronic disease, self-management, exercise and other areas. This is the goal of the evidence-base, disease and disability prevention program launched in 2003 and expanded this past year in partnership with the Atlanta. We're across 24 states. Our long-range vision is to see the evidence-based programs readily available in every community across the country. Another important strategy that we're advancing under choices focuses on helping people who are at high-risk of nursing home placing to remain at home by giving them more choices. This includes using flexible service models including service directed models to give individuals greater control over the types of services they receive so they can better address their own particular needs and circumstances. As you know, the cash and counseling model has showed us that we can effectively turn control over consumers. What a model idea, right? It works. Both older and younger individuals alike and they can successfully maintain high levels of quality and consumer satisfaction. Since 2003 we have been working with our partners in HHS and the Robert Johnson foundation to support the replication of this model nationwide. This year we have launched a nursing home diversion program to help states offer flexible consumer directed services to individuals who are at high risk of nursing home placement but not eligible for Medicaid. That's very important. We're calling this a community living incentive. Incentive. And it will become our version of Money Follows the Person demonstration except it will be a prevention strategy that gets to people before they enter a nursing home and are forced to impoverish themselves. The third component of choices is the strategy you may be most familiar with and that is the one most relevant to our discussion advertise, of course, the work of AoA and CMS, establish one-stop shop entry points, the "No Wrong Door" concept to all long term support and care services through the aging disability Resource Center. By empowering consumers with disabilities of all ages with information personalized support and streamlined access they will be better equipped to make informed decisions and better able to choose the alternatives that best meet their unique needs and preferences. Streamlining access to long term care supports and services is key to the success of the ADRCs. We all know from experience that obtaining the array of supports and services needed to help an individual remain as independent as possible can sometimes be a daunting task. I know that each and every one of you go through this in many stories and many individual assistance every day. You know it very well. I know it, too. I just went through my father's accommodation of bringing him home after he fell and fractured his hip and had to have not one but two operations. And I virtually... you know, I've worked in this system for over 35 years and I had to fight the system to bring him home because he wanted to be home with my mom. I had to fight the system. >>Josefina Carbonell: So, imagine what individuals that have no experience in this area, experience you know well what they experience when they're trying to remain at home and independent and choosing their own options. It's very difficult. You've got to fight the system. I just went through it. >>Josefina Carbonell: But we've been working hard at it and I'm not going to stop until I leave this place. We want to make sure that movement continues and that the vision for the ADRCs and that are networks will be working together will serve as a visible and trusted resource to access long-term services and supports in every state and community in this country. The Congress gave us that authority and the last reauthorization of the act and we, all of us, sitting in this room will make that happen. For this reason we believe that ADRCs need to be a key element in every state's rebalancing agenda. Not just at the federal level. It needs to begin at the state level. And you are the people that can make it happen. >>Josefina Carbonell: We believe that our two advocacy networks both with long histories of helping people with disability to remain at home and in their communities can effect the greatest change and provide greatest leadership to provide people of disabilities of all ages by working together in a coordinated fashion. Historically at the federal state and local levels separate entities have been created to serve different target populations, the elderly people with serious mental illness, developmental illnesses. I was talking to Bob on a side bar before we started about this in many ways these separate services have helped to focus attention on the unique needs and circumstances of each targeted population. As more and more younger individuals with disabilities live longer into old age and as increasing numbers of older people develop disabilities, there is a greater common ground among us. I believe that the time is now to effectively support all individuals with disabilities. Not by breaking down the respective networks but by building stronger bridges between them through effective partnership and collaboration. ADRCs can be one of these vehicles to bring our networks together. It's already proving to be a very effective one as we forge forward. And we can certainly, through the ADRCs, provide an opportunity to assist us in moving from separate systems for different targeted populations with limited or no coordination to systems that acknowledge our differences, maintain our identities, leverage our unique and individual experiences and to create the maximum benefit to the individual. Through the ADRCs we have the opportunity to maximize our resources and support of people with disabilities and also to provide more effective supports for the increasing number of individuals who have need for services that cut across traditional aging and disability network lines. Long-term services and supports provided in a collaborative coordinated manner across aging and disability systems will ultimately result in a more positive experience for the individual and their family. In the nearly four years since the ADRC initiative began, we have seen a number of models emerge. Many of these models represent strong new partnerships between aging and disability networks. Of course, we still have much more work to do in developing effective ADRC models that serve people with disabilities regardless of age or income. AoA and CMS have collaborated since the onset of the initiative to provide strong technical assistance to states and enhancing systems of information and access to long-term supports. And I'm pleased to announce at this time that AoA will be providing support to the National Council on Independent Living so that they can help us in insuring that the ADRC system is being developed across the country represents strong partnerships between aging and disability networks and are able to most effectively serve people with disabilities regardless of age. >>Josefina Carbonell: We certainly look forward to this partnership with NCIL and hope that you will all join us in our work to create better systems across aging and disability networks and support of the people in need of long-term supports and services. In closing, let me just express that at the federal level we will continue to provide leadership, technical assistance and some of the funding necessary to create better systems to support people with disabilities. But all of you, each and every one of you in this room, are the ones who are in the front lines of change. You are the change agents at the local level and at the state level. You must continue to advocate, you must continue to move forward together as a unified network of advocates and providers so we can make sure to create tremendous energies and exert much greater influence in health and long-term care in each of those state houses. We need to accept the challenges and seize the opportunity in front of us. And I believe it's not only the right thing to do but it's the right time to do it. We have no time to waste. Thank you very much and God bless. >> John Lancaster: Thank you so much, Josefina and Percil, we really appreciate your remarks and the focus in them. We do indeed appreciate this collaboration and support with the Administration on Aging. We look forward to working through their agent, the Llewellyn Group to work with the CILs and the agencies around the county to help create that connection that you talked about so eloquently. Thank you. Bob and I go back a long way. I can remember standing in front of Metrobuses before they were accessible with Bob and some of his cohorts and doing other things that I don't think I would have the courage to do anymore. Bob still would, but I don't know that I would. Bob and I both came to our disabilities in a very similar way. Quite some number of years ago over in Vietnam. I think he would say what I say: It's maybe the best thing that ever happened to... because of the opportunity it gave us in life. To make a difference in the lives of people that lived in institutions or may still be there, that don't belong there, and to work at a variety of levels in those institutions and also here in Washington with the likes of the Josefina or Percil, and to come to the understanding that they're all great people and all have such tremendous potential if they are given the opportunity to direct and control their own lives. >> John Lancaster: Bob, besides being an honored veteran and a well educated dude and I could go through the academic credentials he's not only the leader of ADAPT, but is a man who has had a profound impact on U.S. policy in this country as it relates to people with disabilities. Transportation, the Americans with Disabilities Act, long-term care services a variety of things in his home state of Texas and also here in Washington, D.C. He is a man of immense courage. A man of tremendous with tremendous community organizing skills. Probably the best community organizer I have ever met >> Yep! >> John Lancaster: a brilliant political strategist, although he may not agree with me on that. But I think he is. He thinks he is slow, but I think he is brilliant. He is a man with immense focused passion for what he does. He is an advocate better than any I know, and it's an honor to sit next to and introduce to you, Bob Kafka, the Head of ADAPT. >> Bob Kafka: Thank you, John. I'm a lot more comfortable behind the sniffing carbon monoxide of buses. I suppose, it's not environmentally okay to talk about that. I met John just a quick story. He was the Advocacy Director for the Paralyzed Veterans of America, and actually I think got let go because although he came to work with a blue blazer and a tie, he would also wear blue jeans and boots and the paralyzed veterans didn't think that was professional enough. And you can see he has changed a little bit over the years and has learned to put on a full suit, but I think his advocacy has stayed the same. I really want to thank John for the invite. I have just a couple of disclaimers really quick. One, I don't run an I.L. or work at an I.L. I don't volunteer at an I.L., and actually I'm no longer a person with a disability. I'm now covered by the Older Americans Act. >> Bob Kafka: I feel somewhat strange to be here at NCIL and with the ADRC, although some of my best friends work at ILC's. And I am involved with ADAPT, and I want to tick them off. I think we really are a cross-disability advocacy regardless of age. You know, we firmly believe in the principles of the ADA, which is the most integrated setting, community integration, and I think that is really important. When we talk about services, we sometimes forget about the civil rights aspect of it, and the ADA setting brings us back to really what this is all about: The fact that services need to be based on function and that the SILOS need to be broken down, obviously consumer control and input. And John mentioned that before: Nothing about us without us. But you know I'll talk a little bit more about that, but you know, input is only good as equals, and the word that I'm not going to talk too much about that but you need to keep in mind is power of equality. Being input after the fact is not input; it's basically being a token. And so what we really need to demand about nothing about us without us is equals at the table from the very beginning, and I think that is very important. >> Bob Kafka: The other thing and you know, ADAPT is best known for the sort of what is the protest, directed action, organizing about building people power and bringing about change. You know, I've been told many times, You know, Bob, it ain't the 60's any longer. It don't work. Well, anybody that knows the sports analogy, the best basketball teams can sink free-throws and does layups and good defense, so the basis of good organizing in 2007 is as good and as effective as it was in the 1960's when social change was sort of the mantra. Today the times have changed and the technologies have change and I think directed action organizing is going to ultimately bring about the sort of equality we want with vehicles that we can use such as the ADRCs. I want to talk about how all that I just spoke about relates to the development of ADRCs. In talking to people even before I got here, there's quite of bit of suspicion about what are these ADRC's? And what are they about? And what is their role and how does it affect IL? Are they taking over? And things related to that. I'm reminded about the comment that even paranoids have enemies? And so, again, the talk of equality, cooperation and collaboration is fine at this level. The real challenge is at the local level to really assess about the input and the equality of power of the groups in the local communities. So when I looked at it and I looked at the proposals for the ADRCs and I said, Well, what could be bad about grants that promote awareness, assistance, and access? It seems logical that it was a way to start breaking down our fragmented system, and I thought about why people might be suspicious about that. To some degree, it's really built around the way that disability community itself is organized. You know, when you're 60 or 61 you're covered by the Older Americans Act and it's really easy to define that. Disability, though, is more a legal and philosophical construct especially as it comes about with services. There really isn't disability services. There's categorical: Disease, functionally related, categories that were organized around both in our advocacy and in our service providers, and it really does make the challenge of trying to pull the disability piece of aging and disability together, because our history is not over at HHS. Our history people don't frequently remember... it was when HEW was HEW and the disability and IL community that is sitting here decided to go over to education because HEW is welfare. And so we separated ourselves from Medicaid. We separated ourselves from the whole HHS structure. The philosophy of training, peer support, get a job, independence from government, from the medical thing is a fine philosophy, but we found over the years that we need to be over, also, with support services that HHS now supplies. But look at how HHS is now structured. The Administration on Aging. There isn't an Administration on Disability. There is something that covered people with developmental disabilities. And there is a hole there. Where are people with physical disabilities? The Social Security Administration, but that is employment. But where is the support network? There is no logical structure in our federal government addressing disability, but there is in the developmental disability world, and that is a part of the development that Aging and Disability Resource Centers are now looking at, and we are seeing it as mostly aging and physical disabilities. Let's be honest. The mental health community doesn't want to be in the ADRC, and it's because they feel more powerful being separate. Now, we don't want to say that. That is sort of politically incorrect. It's not cross-disability, and it's not what I think is beneficial to people with disabilities who are actually having those labels. But it does, though, benefit the providers and the professionals that make a lot of money off of disabled people. And I think we have to be honest as we start developing these ADRCs and talk about consumer control to realize that the block is not the fact that we don't want to work together, but the providers who make money off of us and the professionals who also are in that realm, don't want to give up the territorial power and the turf to make ADRCs work and break down that fragmentation. Now, no one will ever say that publicly, but you know, we use the civil rights analogy quite a bit, because we are really a lot more the cotton that is being picked by many industries, and the move toward consumer control, ADRCs, a lot of that is frightening to many, many people who have made their livelihood off of using our need. They do the most bizarre things. They talk about cooperation and then encourage states to do brain injury waivers. And the newest kid on the block are autism waivers and medically dependent children's waivers, and then, oh my god! There are 14 waivers in Pennsylvania! We have to consolidate! And then we have contract managers running around providing for the same SILOS, and now we are telling Josefina, break down those SILOS ! >>Bob Kafka: So we really need to start really thinking about first globally what is some of the blocks, but then also what we can start doing from here, because, the game is where we're at. You know, the first thing is we have to reform nationally the whole fragmented long-term services system and we have to break down the institutional bias that's in our system. Everyone talks about that and we really need to go out and do that. >>Bob Kafka: And I can tell you... and, you know, many of you haven't chained yourself to anything in your life... >>Bob Kafka: But let me ask you, we have more paper, you know, I've got to AARP's public policy. I have 40 books on the benefit of home and community based services. Ask me. Steve Tingus, tan COde. I have more books on home and community based services. How many of you think logic is going to win this damn thing? They know all of it. We don't need any more research. We don't need any more illustrations, best practices. We have 40 years maybe not 40 25 years. What we need is a political >>Bob Kafka: What we need is the political will, both the system and the passion at the local level, because, again, you know, it's oftentimes said, you know, the individual story, but until we get those individual passion grassroots and ADAPT has been trying to bubble it up. We need more passion inside the loop, as we say, about this issue. Because after we've been working, ADAPT has been working on this for 10 years. It is amazing how frustrating it is. Again, enough is enough. Time is here, so we have to change this fragmented system and the institutional bias is step one. So we need to do that. There's some practical things we can do. Again, I hope this doesn't offend anybody. We have a developmental Disabilities Act. We could change that to a significant Disabilities Act and just by changing the age of onset to under 60. And, again >>Bob Kafka: And, again, not because I think we should do that, but we have the older Americans, we have the administration on aging, the Older Americans Act has come in. At least then we would have a legitimate within HHS, aging and disability. At least then it would be sensible. I do believe now that I'm 61 that when I was 59 I needed services the same way, but, again... >>Bob Kafka: We have to take baby steps and the first thing is to develop a significant Disabilities Act that has age of onset under 60. At least ADRCs fit into that as a logical public policy movement, and it's something we can do and advocate for when the DV act is reauthorized. We can get push back from Paul Marcamn and all the other people John has to go to lunch with. I'm in Texas. The other is communication and collaboration. We have to recognize that we speak different languages in the aging and disability community. You know, we need to confront the disagreements on things where we may just have to agree to disagree. One of the major things that I think is going to come up over and over again and I think we should address it up front is the different views on accessible, affordable integrated housing. Assisted living is a lot more popular in the Aging Network than it is in ours. We could spend hours talking about the philosophical and the reasons for the different things. We need to get it on the table at the local area. >>Bob Kafka: You know, I know call myself triple RS, but it was politically incorrect. Language was important to people. I used to say people with disabilities, old and young. I got beaten down. The older community didn't want to be called a person with a disability. Even if they were all had cognitive, physical don't call me a disabled person! I'm old! Okay. I now say, people with disabilities and older Americans. I've been beaten down. But that language is important if we're going to communicate between our communities. We have to learn it. It's like different cultures. And it really is different cultures, different provider bases, different histories. They come from different places. The agencies on aging is politically connected at the local counties and government. Independent Living is now many a direct funded, makes a whole bunch of different political connections at the state. We just have to talk about that. We have to recognize that. And not just go about like we're totally the same in all the things just because we say that. I mean, we're different. We need to recognize that. And then I think what is most important, I think that everybody I think this would help clear up the suspicion in states where many of the ADRCs are not as developed or just getting off is what is the role, what is the vision in the place of ADRCs in the bigger picture, because I I'm in Texas, and I met some of the people from the ADRC conference and we have in Texas, area agencies on aging, all very effective, 30 something of them. We have ant 16 Independent Living Centers, a SILC. We now also have integrated managed care. So we have the HMOs with service coordinators. And we have state agency people who are also now integrated. We have relocation specialists who are funded to go in and coordinate. So now what we're developing in Texas is we have to have a meeting. So we have to have a meeting about what we're to do to get people out. Before you get people out, you have to have a meeting, get on schedule and you have to have a lunch. The person is sitting there in their own urine and Feces to decide who is going to go where. It's insane. >>Bob Kafka: But that is the reality and we ... unless there's a clear role of what the ADRCs are going to do in the transition period, when Nirvana comes and we all live happily together like Rodney King said, until that day happens, when the meek inherits the earth ... we're still waiting ... I think we just need to outline what that is so everybody understands and do that. That's easier said than done, but I think it's really an important piece and I just want to leave you with the sort of thing of the old union organizer. Don't mourn, organize. Thank you. >>John Lancaster: Thank you all very much for attending this very important luncheon and I want to especially thank our guests up here, Dr. Stanford, Josefina Carbonell, the assistant secretary for aging over at HHS, and our good friend Bob Kafka. So I want to thank you all. I wish we had time for questions and answers. We don't. But I want to tell you that immediately following this workshop- or this luncheon at 2:00 in independence A is an ADRC workshop to talk about these issues, and that is at 2:00. If you ear interested, please attend. The title of the workshop is Aging and Disability Resources, your new friend or competition. Please, independence A at 2:00. >> Free our people! Free our people! Free our people! Free our people! Free our people! Free our people! Free our people! The National Council on Independent Living
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