JOHN WINSKE: Hello? Hello? Hello. Hello everybody! My name is John Winske President of the Disability Policy Consortium. I want to welcome you here today to hear of our Olmstead hearing which we've been conducting across the state. Obviously, we have a large crowd today, and we are thrilled about that! We thank you for coming out. I want to start by introducing the rest of the people here on the panel. To my right is Charlie Carr with the Massachusetts rehabilitation Commission. Dr. Jeanne McGuire with EOHHS. Next to her is Ann Hartstein, the Commissioner Of Office of Elder Affairs. And Heidi Reed from the Mass Commission for the Deaf and Hard of Hearing. Janet Labreck, Commissioner of Massachusetts Commission for the blind. Ellie Shea-Delaney who is a deputy Commissioner for Medicaid, part B long-term care. And Commissioner Elin Howe, Department of Developmental Services. I want to thank everyone for being here. We're going to kick things off with a brief presentation by Dr. McGuire on where we currently stand with the Olmstead Plan. DR. JEAN McGUIRE: Thank you, John and it's great to have everybody here, let me see if I can take this out. We're going to try to make this presentation relatively quick, because we're starting late, so I'm really going to apologize I guess to the signers as well as to the audience for moving quickly through a lot of information. This information can be found on mass.gov on the EOHHS website, if you follow the links to community first, you'll be able to find the Olmstead Plan as well as a lot more about the data you're going to see. So again, thank you John, and I think for those of us that have been travelling around the State with these discussions, Bill Allen the leadership has been wonderful in gathering a diverse range of people and we're happy, although often troubled to be sitting and listening to the concerns that people are raising. So thank you for coming out today. And first of all, in terms of our summary in the presentation here we're going to be looking at what the Olmstead Plan is very briefly and talk about what has been accomplished. Specifically that comes out of that plan if terms of the better data so that you and we can make decisions. Some real successes that we've had. What is planned and what's been at risk because of the financial environment and thoughts about moving forward together. I just want to take a minute, the Olmstead Plan in general, I know many people in this room are very familiar with, but it was in 1999 Supreme Court decision relative to a case of two women with psychiatric illness in Georgia seeking the opportunity to get out of a psychiatric institution and get back out into the community. It was an ADA affirmed the fact of people with disabilities across ages have the right to live in the community. Among other things the Supreme Court recommended and the centers for Medicaid and Medicare services at the Federal level set as an expectation is that states would actually put such a plan in place and it took our state ten years to do it. The people had a plan, but the state didn't have a plan and the plan that this Governor, Governor Deval Patrick put in place last year, said that elders and people with disabilities had put together in prior administrations. I want to take a minute and read the vision of that plan because it is what we are working from. It's not what we're always able to achieve. To empower and support people with disabilities and elders. To live with dignity and independence in the community. By expanding, strengthening and integrating systems of community-based long-term supports that are person-centered, high in quality and provide optimal choice. That's what we're trying to live up to and I know that's what you're trying to hold us responsible for. The Olmstead Plan goals, there are six of them and you can read much more about the plan. But they're pretty straight forward in terms of how they come out of the decision and in gratitude to the people that did the people's plan, they're also breerd than the Supreme Court decision because they reach to employment and housing and other areas that are so important. First help individuals transition from care. Expand the access to community access long-term support. Third, improve the capacity community based callity of long-term supports. Fifth, promote employment of people with disabilities and elders. Six, promote awareness and long-term supports because we know sometimes people don't have what they need because they don't even know what's there. First of all, in terms of data about long-term supports, the populations the services and their service utilization, a core part of the plan called for the fact that we don't know who it is and what they need. And so, we've begun to pull this information together and there is a lot of data and a lot of slides that you may find very interesting on the website. I'm just going to point out some highlights. People with disabilities comprise about 15% of the total Massachusetts population. But when we look at the people that have a long-term support need, that's about 10%. That's a lot of people about 630,000 and we know we don't have the plans in place to address their needs. More than half of the people are under the age of 65 and it's a reminder to us that this is a lifespan issue not just elder issue. And our need to put our funds in the community to berth support them is transparently linked with that data point. The number of people with the long-term support disability is estimate today grow 15% between 2007 and 2020. That's because of the aging demographic of which we're all a part but also because of the fact that people with disabilities are surviving longer because of the supports we've put in place and we need to make plans around them. And most people with long-term support disability needs are poor. And many who are not poor, cannot get coverage through the public programs we have. So we know we have to fill that gap, and I see lots of signs out here reminding us that the gap is widening at the moment, not getting less. This is a very informative slide but it's to let you know and there are lots of ways on the website to learn about this, that people with long-term support services receive services through many, many state agencies, some of which are represented here on the podium, the department of mental services, the department of mental health, the Mass. Commission for the blind, the Mass Commission for the Deaf and Hard of Hearing, the executive office of elder affairs and of course, more broadly, the Department of Public Health and many others. So, the reach and the breath of the services are across our agencies and sometimes our challenge is actually making sense of the eligibility and service and people that crosswalk in those settings. The Commonwealth spends about 5 billion dollar across long-term support services when you look aI don't say the payor sources. When you look at this slide and there are many people part of this discussion, when you look at all the funds we have, we're doing better in terms of the money that's in the community supports arena. When you look at the resources that are in the Mass. Health State plan, they are still differentially locateed in institutional services. But it's really fortunate remember, and this is the complexity of what we've been working with, that in the prior slide a lot of the money in the community represents labor related dollars which is also Medicaid dollars that flows through agencies. I know many of you are not interested in this specific I had by I see some that are. If you long at our services that provide long-term supports there is real growth in utilization. This is a result of a flat line there on the '08 in terms of the middle one and picks up again in '09. The PCA program has expanded substantially in the last decade and group health and foster care have had modest increase in moving along. I'm going to leave data but it's really important that those who worked on the plan said you have to get your numbers right. We're much further along with that than we were. The next thing that people really encouraged is that we have clear policy framework so you can use them for advocating and we can use them for administrative decision making. The community first Olmstead Plan that the Governor launched last year is the most important of that. And I thank the peep that will made that such a very comprehensive plan. At the same time, the economic circumstances that we've had in the last year, continue to to have, have diminished our ability to actually get to realization of some of the actual components of the plan. So they haven't gone away. We haven't forgotten what needs to be done but haven't been able to do it yet. With that plan as a basis the Governor was able to move forward with an incredibly important plan at the Department of Developmental Services. It's about appropriate care and moving money from the institution to the community. Last year Commissioner Howe led the -- we also have a strategic plan that the Governor announced last summer to make Massachusetts a model employer of people with disabilities across the life span. Earlier this week, we announced stage one of that plan which is a self-identification process, but now we're moving into stage two which is changing recruitment and retention practices. We also reached out to private employers this week to start businesses getting onboard. We know people want to work and people have to work. In late summer, the department of mental health had convened at the Commission and came out with a report and that's what the result of closure of 200 institutional beds. Again, these things are based on the framework of our Olmstead, move people into the community, get them jobs and services and places to live. Olmstead requires us and the Governor convened a long-term advisory group. Commissioner Hartstein and I chair that and it's for a road map for financing care over the next decade. Our plans are well.underway and I'm not going to take a lot of time with this. Our first -- to close is down to 123, so it changes every week and this is by far, the, this is by far the lowest it's ever been and the lowest it's been in this administration. So we're moving along. The DMH (applause) -- Thank you and thank you Commissioner Howe. The DMH study Commission's report that process is well underway and assistant secretary Ellie Shea-Delaney is contributing significantly to that moving 200 people is a big job and a lot of you are helping us with that and the long-term care findings group is well along in its process and we're planning to do a public plan discussion. In December, we hope you'll be a part of that with us. Things are moving, there's a website, it's a great thing and it's great for our current employees who are people with disabilities or potentially aging into disability. It's good for new employees coming in and out and having a private sector on board. Let's talk about things we hoped to do in terms of community first this year. First of all transition people from institutions without going into it, we've been sued a lot. Suits help us move along. In the case of Roland and Huthchinson we're helping people with mental disabilities as well as brain injury. We have about 640 people that we have to move over a four-year period and Hutchinson will go into the process in the new waivers and we'll start moving people there later this year. The closure plans and components of the expanded elder services are all driving more community placements. These are a few numbers on the sheet of people that are going to be moving this year, but they actually don't reflect all the numbers of people that are either going into institutions every day or help to get out. That's part of the data points included. In terms of expanding and providing access to long-term supports the department of mental health restructured its community supports that went into effect in July. There are changes occurring in our frail elder waiver that will allow people who are in -- to participate in that waiver and provide residential supports for elders through that mechanism. And finally, the brain injury waiver is getting us a way to create a better nursing transition process as well as network purchasing which will effect a lot of community first efforts. We have a lot of planning underway for integrated referral here in care management. These are things being noted that are important for people with disabilities and elders. Many of you are involved in it. We are designing our elder department services waivers. We have a home initiative underway, a Medicare/Medicaid dually eligible. We have a place for elders now but offer disabled under 65. All of these things present opportunities as well as changes in terms of system management that we will be engaging with. There are also many, many efforts in the Olmstead Plan that are underway that we're not going to cover today. I want to point to a few. The aging resource consortium, Secretary Hartstein and Commissioner Carr are leading the process next week for the next step. Person center planning we're trying to get there. Consumer direction is also expanding, only not at the rate we had hoped. And the PCA program the pay efforts and pay registry and many, many activities. There is work without limits, the private employment partnership, again we don't have time for that today. And I see some people in the audience working very much with us around accessible housing. There was a large summit yesterday with disabled and elder advocates with architects, financiers public housing authorities. We know people can't stay in the community if they don't have a house to live in. We're not nearly where we need to be on this one. (Applause). More to come there, and people said we need more information, we have actually expanded, we've started long-term care options counselling effort. We know that needs to go further. We have uncertainty about the resources for that at the moment. The Mass. Health, the aging and disability information locator, the PCA directory, there are lots of different ways to improve the access points. The budget has been bad and it's still going to get worse. I have to say though, this is an easier meeting for all of us than the last time. The Governor sought to preserve health and human services and thank you to everyone in this room who was part of sending a strong message to the State House. (Applause). Nonetheless, while we didn't have a 300 million dollar cut, we had an $80 million dollar cut that are cuts to real people and real services. And forestall a lot of the one time budget resources we're going to have to deal with next year. We're going to need your plans and thoughts because we are still projecting a 2.4, 4.8 billion dollar deficit. So this discussion is not over but your activism was incredibly important. In a context like this, how do we move forward when we have really strong plans but if you're waiting for resolves you could care less about the plans right? Okay. If we don't have plans we have no basis to measure ourselves and for you to hold us accountable. This tells you how complicated any of those plans are. There are lots of them and they're on the website. Many of you know the nuances more than I do. But we're facing a budget challenging environment. What are we going to do. We thank the DPC because we want you to first and foremost use our community first plan for the budget decision making. The Governor heard numbers, values, choices, he heard capacity, keep using the plans that you make and help us make decisions against them. Second nobody want to say hear this, but we need more suggestions both about savings and revenue opportunities. There are some things we could do better and there are other places we need more money. We need your help. Third, make cheer the impact of any reduced, altered or eliminated services. Because once they go away, nobody sees them. Don't be quiet. And you haven't been. Fourth, identify teaching alignments. Whatever is coming out, if it's going to be the conventions we've been looking at, we have to work differently together, structurally, organizations, et cetera. And finally keep up the dialog keep the policy discussion forward, because the truth is people with disabilities and elders, we're not going away. We're still going to be here, there are still going to have to be plans and services, and we have to figure out what the resources are. On behalf of everybody out here today, thank you so much. I turn it back to John and Bill and thank you for your leadership. (Applause). JOHN WINSKE: Thank you so much. Right now I want to apologize to Commissioner Ellie Shea-Delaney. I apologize. We're going to move right into the testimony because there are a lot of you and we want to hear what you have to say. I'll ask people to please hold yourselves to five minutes. We have a lot of you who want to testify and I will hold up a three-minute mark and two-minute mark and when you get this -- Joanne Miller from BCIL. (Applause). >> Joanne Miller: JOHN WINSKE: After Joanne we're going to have John Penny. >> Joanne Miller: There are milestones in everyone's life, some joyful and some grievous. However on my 40th birthday I remember it all too well. The engineer before in 1992, I woke up institutionalized in the greenry in Massachusetts after experiencing a major motor vehicle accident on the North Shore which left me comotos for 89 days. Prior to this I was having a happy life in Plymouth surrounding by friends and family. My brother, intuitively, made me my own guardian which restored my self-esteem. This made me feel like I'm still my own person and gave me the confidence and responsibility of changing my life. He purchased a computer for me and again, intuitively, someone tutored me how to use it. They asked me what do you want to look for? I said how to get out of here? Imagine, he Googled independent life, which showed me Bill Henning who sent me to BCIL. They showed me all the formalities I needed to be discharged. I needed a PCA, primary care physician and my SSDI sent directly to me. No longer must I live a life sharing a room with two others. After living like that for a few years I didn't bother to wear street clothes. After my morning shower, unless I planned to go out or expected a visitor, consequently, I did not partake in activities. They had stopped giving me therapy, saying I showed no progress. The truth is the government wouldn't pay for it anymore. I spent every day, all day in the room alone in front of my computer. I needed an address and home of my own. BCIL give me potential home lessons. I was choosey because I wanted to move only once. Plus most weren't accessible to a wheelchair for one reason or another. I also alied on my wheelchair, a power chair was denied to me. It took three years to reach the next milestone. My own new home. My brother was so right when he said computers will open a door for me and my world. I am still disabled but living with dignity in my own beautiful home and mobility. I had eight wasted years. Usually, the most productive years of someone's life in their 40s. Now I'm part of the BCIL. Thank you. (Applause). Bill bill we have to apologize to the panelists, you'll just be able to listen to this it is a DVD from a person at the -- homes for the deaf. >> I've been living here five years. Three years -- nursing home. That was four years for a total of nine years I had been living in nursing homes. I'm a young man and that's enough. My goals are to get out into the community, get a job, have a home of my own, experience society, pay taxes. (Inaudible) to work, now I feel living with -- I don't want to live with 8,000 elderly for the rest of my life. I am a young man. I want to spend time being independent. Thank you very much for listening. Thank you very much. (Applause) Mr. Aponte has been deaf since birth. ASL is his first language. Since the car accident that caused his TBI, left-sided paralysis and blindness in his right eye more than nine years ago. One nursing facility in Lowell where it provided communication access. Clearly Mr. Aponte in the prime of his life wants an opportunity to live and work in the community. (Applause). JOHN WINSKE: Next up we're going to have John. >> John: He's not here, his bus never showed up in Malden, but I do have his testimony and I request permission that since you have already heard my testimony, I can help you understand what he would have said if he were here. As President of Mass. Senior council I want to express our displeasure, our concern that equal choice is not a reality for us. And it's not a reality because it seems to be two basic things. One is a lot of information and the other is because of budget cuts a lack of services. People don't know about people choice and the right to be cared for in the least restrictive setting or if the services are not available so that even if they're eligible, they can't get them, then equal choice just isn't there. And we know, we know, that home care is cheaper and less expensive than nursing home care, and yet, seniors are being for forced into nursing homes because they cannot get care at home or in their communities. I suggested before that we really need to look at ways to expand, not just providing the care that the current billed and the current lawses provide, but expanding them for a number of things. Increasing waivers by looking at what's happening in the Federal government, whether it's through Ted Kennedy's class act that will provide a whole new program for people with disabilities, to get long-term care. Or through John Kerry's empowering home act, which would expand the use of Medicare money. Adding additional money, changing the standards of eligibility, so I think it's the SSI limits instead of looking at poverty limits and also a Bill by representative Martin which really expands Medicare use for long-term care. And as I said before, one of the biggest things that needs to be done, and I know you're thinking about it, is at the highest level of the administration to take a look at the importance of the individual and the total care the person needs because it seems to me that practically every department has somewhat role in it including, mental health, as well as just elder affairs family caregiver relief, financial assistance for the families, home safety, fuel assistance, adult day care and transportation getting to and from all of these are important. But I think more importantly, and this is something that Howard is pointing out in his testimony, it's just an absolute disaster that families have to spend all that they have in order to care for poor people who are sick or disabled towards the end of their life to have to give up everything they have in order to keep them at home or in fact, to even provide lower expensive institutional care. And Howard is one of those people who is in that kind of a bind. To read some of his testimony. He says he is a U.S. marine combat Veteran of world war II. He is 86 and has Medicare and -- plan as well. The problem is that he is a caregiver of his wife of 60 years. One of the rules is certified as home bound and eligible for nursing home care. We prefer to stay together if we can get health and home care rather than in a nursing home. Our fear is we don't mind dying in a nursing home, we just don't want to live there. Right now his wife is registered and being cared for at geriatric services in a hospital. It's a start in the right direction but not access to quality community care. And this is one of the things he says. I've done what is suggested to find a way for me and my wife to remain independent in our home. I met with all the nonprofits in my hometown, hall mark health, Cambridge health alliance, the senior center and the human services Director of those services that are offered in my area. I visited a program in Lynn, tried to get the Cambridge health alliance to help out, there was no one that could direct me to community services. I've had conversations with former state workers at elder affairs and our state legislators -- I've heard the story about the nursing home. I filled out the forms, investigated the options, called and E-mailed providers and am here today why I am not being given equal choice. Why the frustration and keep running into road blocks instead of assistance. I'm still looking for ways to remain in the home with assistance for home care. Computer websites and all the pilot program not only of the Federal government but here in the Commonwealth. I find programs here to help you or force your spend down or give up your life savings to stay in your own home. The ironic part of the system is if you do not qualify to community services, the nursing home with take your assets and you're forced to give up your independence and become fully dependent on the system. We are not looking for a hand out, just a hand up should apply. I went through the route of asking for assistance and in my situation eliminated most of the State programs. One State program I would be eligible to participate in the community options program. But there are several problems with that program. I filled out the forms, interviewed to see inaudible -- and it was finally approved. I was put on a waiting list with hundreds of other qualifiers on the waiting list. There is a waiting list of about 400 people now for home care. Finally, he says, other states have lawsuits to enforce state legislators to enforce the Olmstead Plan act. This should insure funding for home care for seniors. I believe there is a better way to spend state funds than a lawsuit. I'm here to ask you to follow the Supreme Court decision and mandate the State budget and provide accurate funding for at least equitable distribution of funds. And that's Howard's statement and I echo that as the President of of -- (applause). JOHN WINSKE: Next up we have James Mccarty and and Pat Ryan and Rebecca Gutman can come up together. >> James McCarthy: I'm a member of the Massachusetts Clubhouse coalition. I have been a member of the Clubhouse community for 11 years. I would like to make a very clear statement as to what the Haverhill Clubhouse is and what it means to me. It's helped me through many difficult times in my life. They have helped me solve problems and circumstances. I've found myself homeless several times and spent time in homeless shelters. It's a secure place to live, give me advice about potential apartments. The Clubhouse is the reason I've been able to live in the community and not to a restrictive environment. I have also experienced many hospitalizations. The Clubhouse is the first place I call from the hospital after I'm admitted and the first place I call when released. They help me get back on track after each hospitalization. They are always there and meet my needs immediately. I walk through the door and see friend to see support me. It's a place of well being and survival. I get overall support. The Clubhouse gives me an opportunity in the community that knows and cares about me. There I'm able to integrate with others like me and solve life problems together. They give me ongoing support and keep me secure so I don't nead hospitalization. The Clubhouse helps me get employment. Haverhill Clubhouse has helped me earn and manage my money, the little that I have and provided me with support. I understand Clubhouse is getting budget cuts due to the State budget. Cut staff hours and who knows what else. I know I depend on the Clubhouse to be open as much as possible. Along with the enormous amount of help I receive from the staff, the Clubhouse is my connection to this world. The members are trying to move forward with their lives and the Clubhouse is a tool to do that. With winter coming it is important for those with mental illness to have a place to go and be safe. Many of us have spent times at the Clubhouse and enjoyed a meal and festivities. I feel that I am being in a community that cares about me. I have no idea where I would be without the Clubhouse and all the help I have received over the years. We need Haverhill Clubhouse and all the Clubhouses in the state to remain as a resource for those who work on day-to-day recovery. 8,000 people with mental illness that participate in the Haverhill Clubhouse every year. We rely on the services to help us stay well. We cannot lose our community support system which is what helps people with mental illness most. I am very afraid of the possibility if we were to lose the Haverhill Clubhouse, the consequences would be tragic. Please help our Clubhouses to stay open and strong. Clubhouses are in line with the intent of the Olmstead ruling and to help people who have mental illness live successfully in the community with the least restrictions possible. Thank you very much. >> Hi I'm Rebecca Gutman and I work at 1199 SEIU. 1199 standard of states implementation of the Olmstead's decision. Today I'll focus my brief remarks on the PCA program. As everyone here knows it's the central piece of our long-term care in Massachusetts. Operating for over 30 years we provide jobs to thousands of PCAs. These 1199 SEIU members still help 16,000 state residents with independent lives at home. Exactly where all of us would prefer to remain as we age or have a disability. The PCA program is also built around consumer control, the idea that most people with disabilities are seniors are able and willing to direct their own care. I want to first thank the at administration. Any budget cut to say the PCA program would result in a short-term savings. The State would lose matching dollars and incur a long-term loss. It helps seniors and people with disabilities live independently at home and saves taxpayers in the State millions of dollars by offsetting costs for nursing homes, emergency rooms and institutional care. With the recent completion of state audits, the PCA program has faced criticism around billing issues and program oversight. As we recognize the PCA programs can always be improved. 1199 SEIU has worked closely with consumers and allies with the primary goal of addressing concerns. A couple of concerns the act addresses is optimals PCA -- and in expanded surrogate program for consumers who want the use of the immediate program but need additional supports. At the same time, we will of course, continue to act as the exclusive bargaining agent. Our top priorities are increased wages for PCAs, full access to health insurance benefits and as near as we can get, personal time off for PCAs and access to expanding additional training offered for PCAs. Ultimately, it's essential to insure that consumers of PCA services have a stablely compensated workforce. They engage with all stakeholders and participate in a care system that's efficient and affordable and a consumer choice. Finally, 1199 SEIU the service employees supports the closure of state institutions in Massachusetts. Please accept our gratitude. (Applause). >> Hi I'm Patrick Lyon. We service people in Massachusetts. I am a resource coordinator, I work with the people who are unable to get onto that program because of financial issues or they don't have the way to find fiscal services. I've been working on this program for a year and-a-half and never realized how important someone it is. I've been disabled 30 years myself. I've been working in the field the last 27 years but I never knew how the system really worked and I'm learning every day as it goes on now. But what I found out and what I'm going to read to you, is that people have already been assessed and approved by MassHealth that they need the service and lost it. I'm going to give you three cases really quick and the numbers and the numbers are the hearings they went to for MassHealth. I will give you this information anytime. One is a gentleman who is 59 years old. I have a release form for me to say his name. Jose Souza. His income level was $1,144 he received social security disability insurance. He worked and paid into the system. His social security increase went up. It brought him up to $1,210. The maximum level for a disabled adult is $2109. He had to start a spend down and that spend down for him was going to cost $4008. He had no money to do this. So now, he's about to go into a nursing home. How else can you find it? What we looked at was, well, who has been helping you? Friends and family have been helping him. Let's write an a bill to do that. You can use that. And he got back on because he had unpaid medical bills. How many people would have the ability to do that. No MassHealth, no PCA program, no friends or families, and they end up in a nursing home. Does that make sense economically for the state to do that. To spend them now into a nursing home that's going to cost enormous money. It makes no sense at all, over $9. What I can consider a great working -- people like myself can work, pay taxes, pay into the system every month and still have personal care attendant services. Why couldn't this gentleman pay the extra money that he was over each month because of the social security increase? We called social security, he can't refuse it. It's something that's forced upon him. Of course he wants an increase, but not if it takes away his daily living needs. Why can't that be worked out with the State, so that person pays that amount instead of paying the $4008 all over again which he doesn't have. My second case is a 66 year-old woman, under the PCA program, worked all her life, her name is Helen Pohr, her income was $2,245. She did a spend down which means she paid into the system to get on medical -- she became 65 all of a sudden her spend down isn't working. So the State has the waiting program, but unfortunately, once that amount is $2200 once you're a dollar over that, you're not eligible for it. This woman is $223 over. Right now, her income, she's going to have to pay almost $9,000 a year to stay on the PCA program. Because she receives 42 and-a-half hours a week plus nighttime hours, we said you can pay the three months and that will equal the $9,000. She was just released from the hospital. We're going to try it and see, if not, she's going to a nursing home. This is a woman who worked all her life, paying into the system. Why can't she pay the $223 to the state. I've been working this program for a year and-a-half and since January, I've worked with a hundred people. This really needs to be looked at, not just for the person's ability but the State. It makes no sense financially. So just wanted to pass this on. We have many, many cases we'll gladly show anyone who wants to see it. Thank you for your time. (Applause). JOHN WINSKE: Thank you. Next, we have Gail Rosenweig, Kathy Levin and Robyn Powell. >> Gail Rosenweig: JOHN WINSKE: Gail Rosenweig, Kathy Levin and Robin Powell. Bill: I don't see Kathy. >> I don't see Gail either. Robin Powell: Thank you for the opportunity to testify today. My name is Robin Powell and I am the assistant Director for policy and advocacy. I have a physical disability so my testimony is personal as well as professional. Employment is an intricate part of people with disabilities living independently in the community. People with disabilities need to escape poverty, improve health and remain out of institutions. Employment allows people with disabilities not to just live in the community but to thrive in their community. Not isolated and acttively engaged. To that end the people with disabilities is the Olmstead Plan. This year, the DPC were proposes legislation that if passed helps insure people with disabilities are -- job opportunities for people with disabilities. Let me provide some context for this legislation. In 2003 during my last semester in college, I began like all of my peers to apply for jobs. Unlike many college seniors I knew exactly what I wanted to do. I wanted to work for people with disabilities in a residential setting. I would send my resume to jobs that interested me. Almost immediately, I started receiving phone calls from perspective employers. Many said I was the ideal applicant and that the interview was more of a formality. PCR graduated with high honors with a degree in social work. Some outwardly expressed their relet the record further reflectance to hire me while others never returned a phone call this. Pattern continued for six months. I went on over 30 interviews, all with service providers. Understandably this was an incredibly discouraging time for me. These agencies clearly violated the American with disabilities act. I was trying to get a job. Fortunately, six months later I was offered a great opportunity to work in a residential program for adults with developmental disabilities. Shortly after starting there I recall having a conversation with my supervisor where I told her how difficult it was to get a job doing what I wanted to do. It was extremely hip critical of their agency not to hire me, since they were working with people with disabilities. You know what? She was right. I was employed at this agency for over a year. While there, I excelled at my job and was even promoted. I was able to complete -- probably because I could relate to them. Unfortunately, my story is not rare. The DPC has heard countless stories similar to mine of highly qualified people with disabilities not being hired by EOHHS vendors, presumably because of their disability. It is well documented that people with disabilities have significantly lower rates of employment than people without disabilities. The one resource that the disability community has is the vast amount of dollars spent on our health and well being -- the Commonwealth spent billions of dollars on residential care, employment, counselling, medical care, support services, et cetera, without any expectation that employing people with disabilities should be a goal. I tried to locate the number of EOHHS vendors that are currently active, I don't have an exact number, but I imagine it's over 1,000 on contract. Alarming low rate of employment for people with disabilities, is employer's relet the record further reflectance. This is an important step for raising the employment rate for people with disabilitys in Massachusetts. I commend the administration's efforts to increase the opportunity with the recent passing -- and strong leader to support 1911 to further open the door for people with disabilities for employment (applause). JOHN WINSKE: Thank you. Do you want to say something? You're actually up next. >> Oh, okay. JOHN WINSKE: Thank you Robin. After Phil Zukas we'll have Brenda Rogers and Sharon Jackson. >> Phil Zukas: Thanks John for expediting me. Good afternoon, Dr. McGuire, stakeholders, fellow advocates, friends of Olmstead. I'm Phil Zukas coshare of the State employment now coalition, a group that was formulated about three years ago by Commissioner Carr, Executive Director of BCIL Bill Henning and others to promote expedient development of employment opportunities for persons with disabilities. If you look at the end of my written testimony, it pretty much summarizes what most folks have been talking about in employment circles for this population all along. Increased opportunities, better job retention strategies for folks who arrive at disability because of aging or accident. And quality skilled training. We can take a look at why these things sometimes work and why they don't. I'm sure you're acquainted with some of these in the new environment of the changing fiscal profile for the State. We find that for example, some of the new grant-driven projects are a little bit below the radar for people not acquainted with the services. So there needs to be hand-holding on those. Also because of cut backs people with human services and workforce development are doing more with less, as is everyone everywhere. But what happens as a result is that some things don't ate get done. There are a number of bullet points on my written testimony, let me offer just a few here. For one, we encourage a dialog, between various partners in education, the State agencies, parents, and youth with disabilities to develop better job-related skills. How many times have we heard in the employment now coalition the Disability Policy Consortium and other places that young people don't arrive with appropriate sense of workplace culture and job environment. Also, and this is new on the table for us, in response to the very successful internship programs, promulgated by the State agencies, what about a year-round program for internships? Why should we necessarily be on a summer/fall/winter program, when system youth get diagnosed or make eligible? October or November. Why should those folks have to wait until the following June to be part of this process? We also would like you folks to continue in some way to support the navigator position and the one-stop career centers as well as making that a full-time rather than as a part-time or as-needed position. We encourage in the State as model program a full integration of all training curriculum for hiring managers, so that this project can really get underway and folks in a position to hire and develop opportunities can be well aware of what needs to be met in concerns with people with disabilities. Mostly, our concerns are old. And our sentiments are, too. And we do understand the difficulty in the budgeting environment in the State. But we'll continue to pursue because employment is a pathway to empowerment, as has been fully stated in the State Olmstead Plan. Thanks very much for hearing me today. And thanks to everyone here. (Applause). JOHN WINSKE: Brenda Rogers, Sharon Jackson and Dale Mitchell. >> Brenda Rogers: (Inaudible) I am a registered nurse practitioner who graduated from nursing programs in the Boston areas, including Boston college twice and the institute of health professions at mass general. At Boston college I earned a certification and the goal was to put the -- at the graduate level. Right there, with the patient, you're a consumer, you're a client, you're a community organization. I was thrilled ten years ago to start my own business with an niche market serving younger disabled persons who lived in the community independently, but who had deficiencies whether it was in judgment, physical, emotional impairments, they had needs in which they required support. Let us remember the tale of Florence Nightengale. You must have clean water, food to eat, appropriate sanitation, and of course, healthy emotional relationships. So, I have asked one of my employees and one of our consumers to join me today and I thank them for coming. It's been great for them. And I want to tell you about what it's like being a small business owner. As a small business owner in developing an niche market, I have enjoyed success and provided services for disabled persons under the age of 60. Many of these people have fear, shame, distrust, paranoid thoughts, a number of barriers that keep them from getting the help that they really need to have to live happily and comfortably in their own homes. The cutbacks that are looked at I have seen, I have been looking at $7,000 a month losses four consecutive months. After looking at these figures, it's small but as a small business owner it's $6,000 a year. People would turn 60, my consumers would call me up, what am I going to do, I am on the waitless. Perhaps they're still looking at long wait lists. Let me say, too, that we take care of people that have special needs. People that require a small business or an niche market focus in order to develop relationships with them. It is my belief that in a larger consolidation of services organization, many of these people would not be successful in getting the services that they need because of their own barriers. Because large organizations follow money, they follow the dollar, and if they make an attempt to provide service and is not successful, many of them just move on and they provide services where they can get in the door. The services that I had been providing and the losses I have looked at really puts the small business owners like myself at risk. $63 a year translates into two staff positions in my company. My chief financial officer said to me, can we cut position as soon as I said, what? We're going to cut our front desk staff person who communicates on the phone to our disabled people, who coordinates services, who changes schedules because of medical appointments, who sometimes needs an ear to talk to someone about something? The CORI which is the criminal record system has changed. People have, in the past who have been found as unsuitable for supervised care in the home can now have their CORIs ex-upongeed. I just went through the hiring process recently and I followed the regulations and brought this person in and told her she was not suitable for home care, assault and battery charges, several of them, suspended sentence, one year and probation, they very quickly contacted the CORI office and she was before a judge on Monday and in two short weeks she said I could check her CORI and she would be available. So, I'm all for rehabilitation and getting people who can't get jobs, jobs, but that requires the oversight of responsible people, like I said myself, responsible, and it also needs face to face instruction, really getting to knowing them and making sure we're doing the right thing. Let me add very quickly here, we have a lot of turnover in home care. One of the reasons we have turnover is none of my employees including myself, get vacations, holidays, holy day, holidays, shift differentials. There are no benefit to say our employees. When they ask me about it, I simply say the contract doesn't pay us to provide benefits, I wish we could but we can't. We lose employees to nursing homes because they can offer better wages, they can offer health insurance and they can offer the benefit that is we can't. And so I would ask you to consider that in terms of making the move away from institutions into home care, in terms of those workers, the people doing the work, to make it attractive to them. So, I think at this time, I will just tell you I believe in small business in the community. We recruit and train people in the community for jobs, we get them connected with disabled people who benefit from their services. I ask you to please support and really see the disabled person with disabilities living independently as well as small business. Thank you. (Applause). >> Hello, I'm Sharon Jackson and I'm professional in home care services. We go into people's homes and care for them and I feel I've made a big difference in their lives. I help them feel better about themselves. Some of them had lots and lots of clutter. We go in and work through with them and try to talk with them, teach them how to take care of themselves, keep their clothes clean, make sure they have comfortable clothes on, sometimes it's not as asy as I'm saying but it's very benefitting. I've put my attention to making sure that their families were very happy. We work to talk about preparing simple foods and helping them on a day-to-day basis. They look forward to seeing us every workday and they build a relationship with you. So that's why it's very important. (Inaudible). It's very important to keep the program active for these people. Thank you. >> High I'm Laura jean Jacobs. I'm 55 years old and I'm a disabled person. I'm also a single woman without family and a professional cat breeder or I was. I've raised some of the best Persian cats in the country. I have several medical problems I face every day. I have to manage raise -- I've had four surgeries in eight months. There are limited resources available to assist me in my life. The clock turns and I have medication to help me through the day. My needs show up in my life, like when I bend over, I experience unbelievable fatigue, shortness of breath at times, and I can't get what I want in the laundry room having to go down the stairs. I conserve my energy to bathe myself, to care for my cats somewhat, which is only a brief time during the day. I haven't been able to wash my hair and haven't been able to lift my arms for five years. It's tiring to get to the hairdresser to do it. And it's stressful. At first I was referred to a larger agency one which could not quite meet my needs. With the Persian cats in the apartment it's hard to find homes and special care shelters because I couldn't manage their care with my disabilities. It was a smaller agency that would take the time to work with me, and I needed someone who was not afraid of cats and lots of them. Today, I can see my own progress. I remain independent in my apartment with a number of precious Persians, I am uncertain of how I will be able to professionally shelter them. I would love to do that. But don't know if I can return to my previous profession. I can only hope for that. I have support which is my home health aide coming twice a week for two hours. She works in my apartment, helps me clean up clutter, motivates me, even if it's five minutes at a time. I'm just glad she's coming every Friday at 12 o'clock. My apartment feels really nice again and she helps me maintain that because I can not do that. Please, support this funding program, continue my community-based assistance at my home. I really need it. Thank you. (Applause). JOHN WINSKE: Dale Mitchell from LGBT. >> >> Is this on? Good afternoon and thank you for this opportunity to testify. My name is Dale Mitchell Executive Director of Ethos it's an access point we have in south Boston and I am chair and care of the LGBT task force aging project. I want to give two separate brief testimonies one is on behalf of Mass. Home care because they're a 30 year member of Mass. Home care and the other is on behalf of Ethos. I would like to testify on the issue of rebalancing. A crisis is a terrible thing to waste and it is astonishing to us in the source of growing frustration that after two years of budget deficits and 4 rounds of budget cuts we still can't balance long-term care services not only from the most restrictive setting nursing homes, but also the most expensive setting into the least restrictive and the least expensive setting which is in the home and community. We know this is possible because four states in the country now have rebalanced long-term care programs. Oregon, Washington, and the land of Sarah Palin Alaska. But we're still stuck at 39% and one of our consumers is at that percentage will actually soon be dropping because here in Massachusetts the home care door is now completely slammed shut. The choices door which is our only significant option, to provide home and community-based services for a frail elderly population is now partially shut, while the nursing home door remains wide open. We think that is wrong. We think that is unfair. We also think it is fiscally unwise. Mass. Home care I believe has testified at a previous two sessions and I would like to emphasize four of the proposals that Mass. Home care has made. One is to immediately fully implement the equal choice law by creating a statewide long-term care options counselling program. Two is to eliminate the regulatory impediments with the creation of home-life through home-type settings for nursing home eligible elders. Three, is to investigate the feasibility of a home Medicaid funded home-community based services for elders who are not nursing home eligible. Do I have extra time for two organizations that I'm testifying for? And most importantly, a three-year plan with benchmarks, annual benchmarks to rebalance long-term care services away from an institutionalized settings to home and community-based settings. That's Mass. Home care. We're very please that the Olmstead Plan has as one of its major goals the issues of access. However, we want to talk about the special affirmative steps that are required for hard to reach or modularized populations. LGBT elders in particular have been very produce found distress. Many of them were subjected to cohesive techniques. Four, LGBTs to have full access to care services affirmative outreach needs to be made both to them and to the providing community. As a practitioner and Ethos is a practitioner in an area that's got a large LGBT aging population, I can attest to the fact that our services are underutilized by the gay, transgendered client. We would like to propose three steps. One is a system wide assessment of utilization of long-term care services by lesbians, gays and transgendered. To have state provided processes to assess the needs of LGBT elders and disabled people. And three, most importantly, to mandate provider training on LGBT cultural competency. Last week, the Obama administration announced the formation of a national LGBT resource center which will be directed at making mainstream services available to the providers we need. That is within the first year of the Obama administration. Three years into the Patrick administration, we're still waiting. Thank you. (Applause). >> I'm not sure if you called my name for this panel. Is it okay for me to speak? JOHN WINSKE: Okay. >> I'm Rochell Sugarman old colony elderly Services and Mass. Health Care. I want to talk about having caregivers spouses being paid as caregivers. Currently, some Mass. Health programs allow family members to be paid caregivers. This is true for the adult foster care program and the PCA program. But these same programs do not allow spouses to count as family caregivers. The PCA program for example, a son or daughter grandson or granddaughter, aunt, uncle, niece, nephew or friend can be paid as a caregiver, but not the spouse. As a result, many disabled individuals are denied care from the person closest to them, whom they trust the most and who cares for them the most. Many consumers do not want to turn to children or strangers to provide their care. Governor Patrick's community first Olmstead Plan, under the goal of improved the capacity and equality of community-based long-term supports under objective 1B, it states, determine options for supporting caregivers across the system of long-term supports. Analysis would include evaluation and appropriateness of a spouse as caregivers in the system. A number of other am states have already moved beyond Massachusetts in this regard. The Federal government allows states to include spouses as paid caregivers in Medicaid programs. A number of states have been allowed spouses to be paid as caregivers for years. California has led the way since 1993. A study done of the caregivers Independence Plus Program in California showed that people living in a community with the help of paid family members, including spouses, cost the Medicaid program less than those who were being cared for by nonrelatives. The studies have found the consumers are more satisfied with the care from relatives and use of spouses as caregivers will also help alleviate the anticipated worker shortage that's predicted in the long-term health care field. Legislation has been filed on Beacon Hill 152 that will allow spouses to be paid as caregivers, added to the list of family caregivers like sons and daughters. Since the Federal Reduction Act of 2005, the Federal government has paid spouses as caregivers without half to go file a section 1115 waiver. There are I believe 13 states that already allow spouses to be paid as caregivers and we encourage that it be if I am time for Massachusetts to join these other states. Thank you so much. (Applause). JOHN WINSKE: Next up we have Dennis Heaphy. Dennis Heaphy: I'm here to talk about the Commonwealth medical -- allows person that requires a married partner of the person with a disability to have their income included in the premium formula of that person. Under the state and Federal level, the government can decide its interest in maintaining unit. The Commonwealth -- married people with disabilities. The program's critical objective was to increase incentive for people with disability to say seek employment -- it's an or remain married if the expectation is this by the state to the person paying not only expenses and medical insurance premiums but also salary calculated in the formula used to determine the insurance premiums of a partner with a disability. We are not talking about school loans or credit card bills. To give you a couple of examples, a person's premium is going from $137 a month to $500 a month if that person gets married. This does not include copayments. A person with disabilities employed pays both their insurance plus a wrap around Commonwealth premium, if they get married, what we're really talk being is the dissolution of families. It will require couples to forfeit their marriage. This is how important the marriage is in maintaining -- we're talking aboutity rights to visit that person in the hospital and to maintain -- we are penalizing people. Thank you. (Applause). >> I'm Ken Mc Donald and have been a wheelchair user. I tarted my employment at an independent living center and I'm gainfully employed since then. During my years of employment, I learned about the common health program and have been part of common health for many years and have seen the premiums steadily increase. Several years ago, I melt a woman and we decided that we would get married. Friends of mine in the disability community said that was the coolest idea. After all, if we got married, my common health premiums would most likely double, but I thought out of principle, that that just didn't seem right and so I did get married in 2005 and as a result, my common health premiums doubled from somewhere around $400 to $800. It's currently $814 a month to be on common health. About two years ago during my redetermination, I went in appeals, premium I thought was excessive. After all, they include my wife's income. However, my wife has her own health insurance through her employer. She pays a premium, I asked her last night and I think she pays about $150 a month to her employer, and yet that is not deducted from the common health premium that I pay. So they're adding both our incomes. She has her own insurance. She doesn't want common health or MassHealth and we're getting penalized. And I don't think it's right. I don't think it's fair. I think common health when created by the Fox administration was an outstanding work incentive program for people with disabilities to become gainfully employed and I've seen it turn into -- wouldn't it be better off if I just lived with my wife as if she was a roommate and we not get married. I would pay half of what I'm paying as a premium. Would I be better off getting divorce? Where is the incentive? I live a full productive life, I'm a home owner and taxpayer, but people with disabilities are getting squeezed and penalized for just wanting to live a productive life and be married. And I ask people to take a closer look at this and assess some premiums we're paying and spouses, if their incomes are going to be included in the formulation, for the premium, then their health insurance premiums should be deducted from that. That's what I would like to say and hopefully, this is going to be looked at. Thank you. (Applause). Dennis Heaphry: One more thing, don't look at this from a financial perspective, but from the focus of a family and realize that it's happening to other families and the rights of the individual person in the hospital and the rights of the children and parents. It's really looking at the broader issues. JOHN WINSKE: Next we have Kathleen Hackett, Ines Maturana. >> Hello everybody, thank you for having me. My name is Kathleen Hackett the President of huntington's disease society. Last year my husband was diagnosed with huntington's at the age of 52. Our lives have drastically changed and it is a harsh reality. It's devastating to wash the disease decrease my husbands motor and verbal skills. The hardships are clearly magnified by the financial worries. Instead of devises the best plan of action for my loveded one to keep him at home for as long as possible we're spending way too much time worrying about health care costs and how it effects our house hold. This is so wrong. We have both worked hard our entire lives and been good members of society. We pay our taxes every year, we volunteer for numerous charities and so on. We thought we did the right thing by planning ahead and contributing to our 401K but are so frightened to think we may lose it all. How can someone expect to fight for their financial future when their whole world is in turmoil. We have to fight this disease. I'm here today asking for the help. It's been almost a year since my husband was diagnosed. We have been seen significant changes in the fiscal and emotional needs. Walking has become very difficult, his speech sometimes slurred and it has decreased his ability -- we have been progressive and proactive for our future. We have met with financial planners and also solicited contractors to modify our home so that my husband can stay home and not have to go to a facility. In speaking with financial professionals I find that some couples as just said n some situations must divorce their spouse so the government doesn't take all of their hard-earned savings. I was shocked to hear such a thing and imagine how sick I felt when I had to consider this outrageous option when there are so many undocumented people that have more options than we do as taxpayers. My hope is to keep similar families together. We want to keep my husband at home for as long as possible to insure the best love and care. This is critical for his well being, since it is a financial sacrifice to rearrange our schedule, I feel the government should be rewarding us and stepping up to make necessary changes to meet this responsibility not making the fight for the disease and hardship on our own by taking whatever savings we have. Right now the focus is on money and not care and it is unfair to the family circle. The stress of the financial worries has made it difficult to enjoy the remaining time with my husband. I recently retired to take care of my husband full-time. We've been spending the last six months waiting approval of SSDI. As this disease has changed our lives, with each passing day, all I do is worry about where are we going to get the services. I speak for thousands of disabled people with similar issues with early onset diseases. Community first is a reality in Massachusetts. If we had better services to help us care for our loved ones at home rather than taking up beds in a health care facility, think of the situation we could make, we could realize savings especially in these rough economic times. Please help us share the burden by providing much needed government services to those suffering the impact early onset disease. Thank you. (Applause). >> Good afternoon, my name is Ines maturana. My husband was diagnosed with ALS in 2002. My husband has been declining ever since. In fact in 2002 he lost his voice, in 2003 he got a feeding tube, in 2004, he lost the movement of his arms, in 2005 he was vented. And in 2007 he lost the movement of his legs. His care is performed by a full-time PCA, various occasional workers a nurse a nurse's aide provided by a private insurance and me. In order to maintain an extra safe approach of his daily routine has to be done by two people. He needs to be transferred from his bed to a shower chair to give him a shower. It's impossible for one person to do it alone. Since 2004, he has been receiving nursing and nursing aide services through a private insurance as I indicated previously. These services have been invaluable to insure his safety to the point that last year we did not have to hospitalize him not even once. Because he's on a ventilator and completely particlized he cannot be on his own because if anything goes wrong with the equipment, he cannot troubleshoot which could easily result in his death. In August, I received a notification from our private insurance that they will drop coverage for the nurse and the nurse's aide that comes two hours on the weekdays. Suddenly, he is completely particlized most vulnerable and depending on others for his every need. After an appeal process, the insurance agreed to continue services until December 31st to look for other alternatives. To get a sense of his conditions and the physical needs of these services, I will read you the letter of support his doctor wrote when we appealed our private insurer. His home services serve a crucial medical need in terms of maintaining his pulmonary function and health. Further, in the letter, she says, he has airway compromised, pulmonary infection or skin breakdown if he does not continue to receive home services. Any of these problems can lead to hospitalization, progression of his ALS or even death. Over the past 7 years we have exhausted our savings to pay for out of pocket expenses and cannot afford to pay for additional health care workers. Furthermore, not having the services of the nurse and necessary PCAs to get the procedures that he needs to stay healthy. This result as an unnecessary frustration for me as primary care I giver. Representatives from our private insurance have strongly encouraged us to get Medicaid. However, with the $65,000 spend down within a period of six months is almost impossible and we're not eligible yet. We're in the process of meeting our expenses to qualify. Dealing with MassHealth has been very frustrating because every staff member provides different answers and our requests for a hearing to have somebody explain our status was denied. My husband is 58 years old. In two years at age 60 he can qualify for a spousal waiver. My goal is to keep my family intact, while we go through this ordeal, but as of today, I have no answers as to how I can do that. Now, when my husband is in an advanced stage of the disease and we need the help and support more than ever, we live in fear from health insurance revoking these -- we're not asking for a handout, because we pay health insurance. I have paid for the two of us for 32 years. He deserves to have the coverage to keep him safe and healthy. I hope our case will help you implement the policies that will cover people such as ourselves who work for a living but cannot afford the rising costs of illnesses or fatal diagnoses. Thank you very much. (Applause). >> Hello, I'm Michelle Dickson. I promise to be brief and I will also add testimony from Ginny Morse. It's very mixed emotion to be here at today's Olmstead hearing. It was almost 8 years ago that I received the first notice of regional Olmstead hearings. In the nine and-a-half years with our chapter there is not a single Olmstead hearing, or meeting I have not participated in. 8 and-a-half years later, it is with disappointment that I do not feel that Olmstead has really fulfilled its mission for people with MS. My time last night instead of writing out testimony, was spent in defense mode trying to preserve a million dollar cut that's going to come to a line item which is one program for MS which is our keystone program in the state that's already received a $55,000 cut less than a month ago. We know the programs will be cut and so my time the last 20 hours has been spent writing letters and making calls and trying to preserve information that's critical. So it's tough to come here and ask for things we don't have when we're about to lose potentially what we already have been cut. We are very appreciative of jean McGuire and Lori Burgess and all those that work tediously on this plan. We really need a 19 C waiver for people in the community because the existing supports are not adequate for all and it's something we've been advocating for. We've seen that now slip away at least for now. We've been advocating since 2001 for a spousal waiver for common health eligibility. Right now people with MS nursing home eligible that do not qualify for MassHealth or common health because they have a spouse that earns. Common health is very generous and there is a spend down but some couples cannot do it. Some couples have 220, 30,000-60,000 spend downs. I'm going to share an example of a couple we have worked with and this is one of many couples. I just would ask this panel to please consider the needs of people -- please do whatever you need to do to develop a spousal waiver or for people that doesn't fit into the system. It's so easy to fall into the cracks and it's easy to keep us there. We don't want to be there. I have talked to people that are on a waiting list for a nursing home and the Commonwealth must do better. I will share a quick story. My name is Brian I married Terry 11 years ago at that time I knew she had a mass and it might get worse over time. I did not know how much of an impact it would have on my life. Terry was diagnosed with MS at 20 she's now 43. I am not sure I know anyone knows what it's like to be married to a disabled person. When we were married, Terry was able to walk short distances while holding onto an able-bodied person walking next to her. Five years ago her legs became weak enough she could no longer transfer from a wheelchair and no longer use the toilet without assistance. It meant she was unable to bathe herself. Before we were married, she was living by herself in a small apartment paid for by section 8. She received SSDI, SSI food stamps Medicare/Medicaid. A good insurance through my employer but there were many medical expenses it doesn't cover. To pay for her medication it's over $100 a month, copays are $50 a month, we often have to pay repairs for a wheelchair out of pocket in the range of $400-$400 a year. While those expenses are significant, our biggest ongoing expense is having a PCA to help Terry with daily activities while I'm at work. Right now we have a woman with no training coming in 3 hours a day we pay her about $200 a week. She is not able to transfer Terry from a wheelchair to a toilet. These means that Terry has to hold her bladder for 8 hours until I'm home from work or sit in a wet diaper. This time at work because of Terry's doctor's appointmentings once or twice a month meaning I use up my vacation time. We have applied for Medicaid twice since we were married and we've been turned down because of my income. Our most recent attempt was a year ago. I understand if Terry were eligible for Medicaid she would have a full-time PCA and use the toilet without my help during work hours. It would help Terry participate in social functions outside of our house. Help her manage medications and it would improve her quality of life. We have considered getting a divorce so she can receive the benefits of Medicaid. I feel more like a nurse than a husband. We have become emotionally distant. Divorce is looking attractive even apart from the possible financial benefits. In a testimony from Ginny Morse to DPC. I am submitting this testimony at this hearing, the need for community based services for people with onset disabilities surfaced in 2003 at the first Olmstead hearing in Boston. The community based services bill calling for state government to provide a flex -- many people with aadult onset disabilities do not have access toity state system but community-based long-term care service. The bill did not pass. Steve Lewis two months after testifying discussed -- legislative leaders asked the DPC what is the woodworking effect bringing people with onset of disabilities into the state and Federally funded network. The DPC's response was information referral, case management and home services to remain living in their communities. People with adult onset disabilities continue to work and have working spouses. There was a supplemental budget appropriation in 2006 and as a result of that, the department of -- studied the onset needs of adults with disabilities. Information referral and home care and case management. As you are aware the age range of 1959 is where there is a severe gap in community-based services. With the 1115 waiver there are gaps for people with onset disabilities. However, we learned in April, 2009 that community first did not meet budget new traditionality. Community first waiver, the administration help plan had alternative programs including the 19C waiver. The administration panel announced the statewide living council in September of this year -- due the the State's fiscal process. This implementation is people in the community not getting sufficient health care services and being put prematurely into a nursing home or becoming financially destitute. It's been over six years since people with adult onset disabilities came to light in the context of the Olmstead -- they have worked in good faith with the administration to address these issues and we're left with no entry point into the health services issue. Adults with onset conditions are allowed access to the same support that's available to others throughout the state including those in other waivers. There needs to be a solution to an ongoing situation. Ginny Morse. (Applause). JOHN WINSKE: Now we're going to bring up Elaine Ducharme. >> >> Good afternoon my name is Elaine Ducharme. And I am a Director of the deaf/blind community access met work but I'm here today to speak about provider services for deaf/blind adults living in the community. Without this provider services, there would be a significant decrease in the level of independence for these people. There would be a lot of isolation because these people would be there in their homes by themselves. These are some people who have lost their vision later in life, and they're able to come into the fold as far as getting services. And through the service, they don't need to rely on family members, such as their parents or children to take care of them. If the services were to be cut, I think they would have to go back to rely on some of those family members. What this service has done since it's been running in this state has really impacted people emotionally, as far as being independent and as far as being able to do things on their own in the community. There is a 70 year-old woman living in the Thompson house and with provider services, she's able to go out on her own and take care of you know, her food shopping and needs. And the house she lives in is completely unstaffed. She does have some family members who have been helping her, but now, with this provider, she has a much greater sense of self-esteem and independence because she's not limited to relying on the family members and staying home. There are no staff members in that facility, she's able to go out for a few hours and get some physical activity, and this person is able to take her out to different social events. This is someone who was deaf and lost her vision slowly over time and this service has helped as far as their communication needs and there are many deaf/blind people getting services from this program, which is a program through the Mass. Commission for the blind, so much so, that there is a waiting list for people waiting to get into this program. And there are other services that they need such as distributing Braille equipment, getting equipment so that deaf/blind people can have systems to half the doorbell and fire alarms, these are systems that MCB provided. So I would hope that both of those aspects I mentioned, community aspect and also the equipment distribution will be maintained through MCB and through the provider program that I'm running, and I think it's something that will be very helpful for all of those people for the reasons I've mentioned. Speaking personally, it's been a huge benefit for me, as a deaf/blind person. Thank you. (Applause). >> Hello, my name is Lori Gonzalez. I work as a Boston regional Director for I understand patient living services at D.E.A.F., Inc. In Boston and this is under DHILS. So this is one of the regions I am working in one of the regions in the State. I am a deaf woman, and I notice from my experience there are deaf people in the state who are striving to be independent, but they need equipment, and accommodations in their home, and these are the people who may not have the financial resources to do that. So video phones, doorbell alerts, fire alarms, things like that, TTY, different pieces of equipment that they need and there are some that are low income, and they are looking for ways to get into affordable housing to get those pieces that equipment that they need. And as we know, people tend to be underemployed so they are, you know, doing their best to try and get these services that they need and become as independent as possible. They become eligible for this under title 7B and that's how they're able to get this equipment through the Mass. Rehab Commission. That's one way they're able to stay in their home safely and independently, instead of relying on other people around them. There are also many consumers I work with who are immigrants and these are deaf people who are not able to read and write in English. Our program advocates for those people and teaches them basic reading and writing skills and ASL skills and helps them live independently. That's a crucial part of that particular program. It's really a quality of life issue, as I said living independently and I would hope that these services are allowed to continue so that these people can live independently for themselves out in the real world. And lastly, I'm going to turn the mic over to David who will explain his role as the deaf and hard-of-hearing specialist. >> David: Good afternoon, my name is David Forino. I work with hard-of-hearing elders as a live independent living specialist at D.E.A.F., Inc.. part of my job is to teach independent living and try to reinforce consumers how they can live independently and teach them life skills and also try to hook them up with equipment which they're eligible for under title 7B as was already mentioned by Lori. Hard-of-hearing people depend greatly on equipment and without that, what they have to do is rely on family members. And this is true particularly for elderly people who are losing their hearing. And with the economy, there are less and less family members available to help them because more people are having to work. In these times, people turn to equipment more for help. And at the same time, the equipment is hard to get because of the financial difficulties that we're in, and that will impact their ability to live independently in a community. And if that happens f they're not able to go to community events, or they're forced to to stay in their home, that will not allow them to be independent and it becomes harder for them to function if they don't have family members that are available. This will lead to being depressed or having to ultimately, potentially go to an independent living facility. As an independent living specialist, that's something I don't want to see because there are so many people completely capable of living out in the community. And I just want to see people get connected with the resources that they need. So I'm hopeful that these services will be maintained for the hard-of-hearing community. Thank you. (Applause). JOHN WINSKE: Carol -- one more time (inaudible) -- >> I'll be speaking for Paul. My name is Paul Remming. I'm 65 years old with CP and live in my own apartment in Fall River. >> We can't hear you? >> Dedicated to caring skills. I depend on my parent that is live a few miles for me and help in case my PCAs don't come in at the last minute. They're 88 years old. Without enable incorporated I would have been put into a nursing home if my parents are no longer to assist me. My case manager, is now my PCA surrogate and helps when I can't get PCAs. She's also working with me to get an apartment. It's crucial for me to live near my brother and sister-in-law to help in emergency situations and I would be able to visit them and my two nieces more often. Unfortunately, it's difficult for me to get an apartment. My present apartment has a site-based section 8 voucher and it's not transported to another base. Because my income is slightly over, I must wait two years for a transfer from section 8. This is a burden for my parents and brother and sister-in-law. In my view, the Olmstead initiative must address site-based -- to get a transportable section 8 and be on a shorter waiting list. This would make it easier for the MRC supportable programs, to find housing for consumers who need to move in the near future. I hope that the Olmstead initiative also finds a way to keep such providers in business with regular rate increases that reflect the real cost of providing living services. And SL services are made available for people -- including those people with mental health disabilities. Enable incorporated, would also be able to serve more people with disabilities than MassHealth's office of long-term care for the hands-on requirement for people can disabilities. Thank you. (Applause). JOHN WINSKE: Thank you Paul. Now Sonia and Ruth. >> Thank you. My name is Ruthy Poole and I'm on the board of M-POWER, it's an organization run for and by people with mental health conditions. We've been around for 20 years and are an advocacy organization and we're the organization that was out front protesting about Olmstead. We're not protesting Olmstead. We support Olmstead. What we're protesting about is the fact that the State is going ahead with a new psychiatric facility in Worcester. That facility is going to cost a total of $352 million dollars. It is the biggest building project in the State of Massachusetts, other than the Big Dig. When I bring this up at various forums, people have said to me, in almost a patronizing way, I must say, no, no, you don't understand, this was passed in 2006, it's a done deal. It's another pot of money, it's bonds. What I do understand is that we're still paying debt service on the big dig, and we'll be paying debt service for many, many years. It will be the same in this new "state of the art" psychiatric building. How can a state build a new institution, institutionalize people like me with mental illness, in light of the Olmstead is a travesty. I opened my Boston globe and guess exactly how much the Governor is cutting out of the budget. $352 million dollar. I said oh, my gosh! That's the exact same amount of money. It just is mind-boggling to me that this project is not being stopped. We've already spent 1 and-a-half million dollars to save the plot at the old Worcester state hospital. Knowing about the horrors that went on there and what the clanging of that clock meant for my sisters and brothers I just can't imagine we're spending a million and-a-half dollars to save a clock. I listened to the folks in this room today, and I think, I can't believe it. These people are worried that their services are going to be cut, of all different disabilities and we're going ahead and building an institution. My understanding is it was a very politically connected deal and I will say it right out, our lieutenant Governor was very involved as was the city of Worcester state representatives and state Senators. It was a very done deal from the beginning. It infuriates me that we're going ahead with this. Then it was brought up to me, not only the building, if you don't count the fact that the money is being borrowed that we're going to pay it back for years and years, they thought the money to run this facility was going to be combining the money that runs Westborough state hospital and Worcester state hospital, however, Westborough is going to be closed in February. That money is going to be long gone by 2012. I'm sorry, Secretary, you I'm not sure if you talked about the blight of spending $352 million dollars on a state hospital. I was not there to see it. Assistant Commissioner of DMH I'm very glad you're here. I was very, very frustrated when I saw the original Olmstead hearings and the Commissioner of DMH was not at one of them. And none of the assistant Commissioners were going to be at one as of two weeks ago. I was very glad to see you're here to listen to people's testimony. The folks who were brave enough to take it all the way to the Supreme Court, those were my sisters, those were people with mental illness and with intellectual disabilities. Those were my sisters and I really want to see the state do something about this because we all know what $352 million dollars buys. Two of my peers in the peer movement were not here today, they were going to talk about options such as peer respites. Many of us when in crisis, we don't need a locked door. We don't need a locked door. We need a friendly ear and a safe place to be. Peer-run respites are very effective to have. That helps us in crisis get through the crisis. It saves money on institutionalization. My other peer, Gail Rosenswag was going to talk about peer -- I was so -- Charlie Carr and I have worked together for many, many years and it was 20 years ago we were talking about the need to change the PCA regulations. I know of folks with psychiatric disabilities who also have PCAs because they have a physical disability and they'll tell you time and again, it's kept them out of psychiatric hospitals. I have one friend post-polio, who has since pass ad way and that PCA kept her in the community. I thank you for the opportunity to speak to you. I'm sorry I'm so angry, but I just don't understand. Thank you. (Applause). JOHN WINSKE: Alison and -- (names not on list). >> Paula Callaghan. >> Good afternoon, thank you for this opportunity to speak to you regarding the Olmstead initiatives and what we need in the community to keep people out of nursing homes. I was going to bring another individual with me here today whose been in a nursing home for the last three years in Lawrence, Mass. I couldn't be here today because he's signing a lease and leaving the nursing home. (Applause). Affordable housing unit became available through CBH community-based housing programs. He is so excited! Doesn't have a lot of family support, but he's going to do great! Now that he knows about us, northeast independent living and the support and the guidance and the skills training, that he's going to need to live independently in the community. (Applause). >> Hello, my name is -- and I'm here to speak on behalf of people in the same situation as I am. At the age of 26, I was diagnosed with MS. Over the past six years, I've watched my health decline. But at the same time, I watch my moral go up due to the programs such as Mass Rehab. I was able to achieve my college degree, and through the services of northeast independent living, I was able to get the services I need to live independently, among the community. Now, I'm a real, real advocate for the Olmstead Act that that helps people in my predicament live an independent life. Knowing that we have help outside of our own families to help us get through these rough times. I'm really appreciative of the services that you do offer. I'm currently right now at UMASS Lowell, going for my degree in psychiatry and criminal justice, I knew it wouldn't be possible if it wasn't for the Olmstead Act and wasn't for programs like Mass Rehab and northeast independent living. So, I come up here on behalf of a million disabled Americans in the world, actually, excuse me, in the country, and the people in Mass that the Olmstead Act is important. It's like keeping our independence. So it's real important that you please see what that does to the people in our predicament. Know that we do understand and respect the pressures it takes. But if it's gone, then we have nothing to depend on, besides outside help from strangers and family members. PCAs are a big help. Homemakers are a big help. They make us feel like we are part of the community and we do have local independence. So on behalf of all people in this predicament, we thank you for the services they provide and ask you not to cut anymore services because that will kind of put a dark light on our independence. Thank you for letting me share this time with you. (Applause). >> Hello my name is Will and I'm from Mass Rehab northeast independent living program. I thank you for the opportunity to speak today. It's a really difficult act to follow W. Many of the services we're able to provide for our consumers, we would not be able to live independently. Without the chance to access independent employment services and housing which is, as you know, is a major, major piece of achieving independence, without the opportunity to try to gain appropriate housing for people with disabilities, accessing jobs and living in the community productively, people with disabilities want to live productive lives so we can actually be a part of society as a whole. Not as a group of people that are being locked away in institutions. To think that we are actually thinking about you know, building a facility to lock people away, that, to me is proposterous and I can't stand for that, nor can anybody in this room. Thank you for the opportunity and please, please, please, continue to support these services that we are able to provide. (Applause). Good afternoon. I'm Karen Tally with the Disability Law Center, which is a protection advocacy organization for Massachusetts. We represent people with all kinds of disabilities -- how is that better? Sorry. I think everyone is a little tired. >> And we focus on issues that are central to full community integration for people with disabilities. We want to keep them safe from abuse and neglect, and give them access to housing, employment, and public service and public accommodation N. A ten-year sense, Olmstead was passed and we as a Commonwealth have made some strides but there is still a long way to go in realizing the promise of Olmstead and bringing down the barriers that we made. We want to be sure that community first is not just a slogan but that it drives every single decision that's made that touches people with disabilities. DLC realizes the budget constraints faced by the Commonwealth are unprecedented, but we also believe that implementation of Olmstead is actually cost-saving in the long run, cost effective in the long run and as many people have mentioned here today, by integrating people fully into the community so they have the supports to gain employment, we'll have a whole new group of tax-paying citizens. That's what all of us want. This written testimony will focus on two areas or, we have heard testimony that's submitted. I'm going to focus on services by the DMH and mast health services. I believe someone from our office testified on Thursday on behalf of the Department of Developmental Services and I've included the testimony again here. With respect to the department of mental health, we again realize there have been some strides that have been made in the last ten years, but it's our opinion that this often results from outside forces. There was often threatened litigation or the need to close institutions that was budget-driven rather than a departmental change and structure that makes community integration a goal for everyone. As a result, we've seen that there are still far too many people in State institutions that don't need to be there. And just in the last few weeks alone, the DLC attorneys have encountered people in state hospitals who have been there 31 years, 15 years, 14 years and one client who's been there 15 years is a client of mine referred by a staff member for a medical issue. It was someone I had seen around he had gray hair. And I met with him about his medical issue. He said I've been here 15 years I want to get the hell out of the hospital. I had to double check because I couldn't believe he was there 15 years. There's a face sheet for everyone when they enter the hospital, they have their picture taken. And he had a full head of jet-black hair when he entered the hospital and it all turned gray because he's been at the state hospital. I've been doing this for a long time, and I don't feel like I want to cry often but that made me want to cry. Again, we realize that they're downsizing the institutions, but we encountered people in the last few weeks and there are no plans to discharge the three people I've just mentioned. They're not on anyone's discharge plan. We've confirmed that. There is also a steady irregular influx of people who are in state hospitals incompetent to stand trial, especially if they have a could current injury that's not amenable to psychiatric treatment, they may stay there for years and this is due to a lack of collaboration from the state agency, and cross disability training and supports that would allow these people to be discharged to the community. And the time that they spend in the psychiatric institutions are most often getting low care only. We're also concerned as a result of budget cuts, service delivery, regulatory changes within DMH people receiving DMH services may not get supports in their community that allow them to get out of the hospital and stay out. It's too early, as you know, but we'll be monitoring that and Olmstead's mandate will be a standard we'll use to monitor those efforts. On a positive note, we want to applaud the DMH for patients out of the hospitals and receiving peer support. Also, respits will achieve a lot. There has to be a wide variety of alternatives to hospitalization for Olmstead. I want to touch on MassHealth issues, access to reliable community-based services is critical for people to live in a community and I just want to tell you some issues that are helping attorneys that we've seen in our office. Coverage for treatment. Reliable access to items and services that require prior approval, durable medical equipment, speech, language therapy, other than prescription medications, the MassHealth prior approval process acts often as a barrier. It's lengthy and seems arbitrary in the decision making individuals as opposed to service providers not being able to get information about what the hold up in the process is. There are long waits for processing and wheelchair, shower chairs and lifts. Even something like new tires for a battery for a power chair can take months to obtain. Sometimes people are able to get repairs and sometimes they don't. The last thing I want to say is that people that need access to community-based waiver services, they often find that the waivers present a dilemma. There are people that want to leave nursing homes and I'm thrilled for the person who just signed his lease today and who could do so with proper supports. The caps on home-community based waivers need to be lifted on Olmstead to be implemented. We do have copies of all the testimony for you. Thank you. (Applause). JOHN WINSKE: Life liberty and the pursuit of the American dream. I'm waiting for the American way here. >> Paul Spooner. JOHN WINSKE: Life liberty and pursuit of the dream. >> That's good. Good afternoon everyone, first I want to commend the panel. I have been come to go this building for far too many years, have sat here for many hours and presented testimony, and I have never seen the panel stay the length of the whole hearing. So you all deserve a round of applause. (Applause). >> Thank you for that. But let me tell you a couple of stories. One note was I know I hadn't even thought about saying this and maybe this is kind of blowing my own horn, but a gentleman testified earlier about how important personal assistant services and supportive living services are for his ability to stay in the community. His original independent living council, was myself. So it's funny to see the successes of your work in over 30 years working in an independent living center. And that should be a statement that we all embrace and recognize that it is a leader in providing community-based services for all individuals with disabilities, regardless of their disabilities. Even though we are a leader, we are far from perfect. Obviously, we face incredible economic times and literally, we're thankful to some degree, that the cuts weren't too bad yet, yesterday, but that the fabric of our safety net is being shredded as we speak. I'm here today to testify on behalf of the 11 independent living centers in the Commonwealth of Massachusetts. We provide services to over 14,000 individuals a year. We assist over 200 annually to escape or get out of nursing homes and we provide thousands and thousands of service units and hours working with all types of disabilities and all ages. Because independent living centers are based on community-based cross-disability organizations that work for and represent individuals with disabilities. Many of the peer role model programs that you see in other disability groups, saw the cross-link in independent living. And Charlie Carr, one of the innovative leaders came out of school 20 years ago. So we should recognize Charlie and his leadership in providing services to the Commonwealth. (Applause). I didn't say that because Charlie -- another note, I went to apply for a job with Charlie and he wouldn't hire me. I'm not sure if that was a good idea or a bad idea. COMMISSIONER CHARLES CARR: You wouldn't be where you are today if I did hire you. >> That may be true, I wonder sometimes where I am today. But nevertheless, I think it's important to recognize that from our perspective, the independent living centers, really see the peer role model consumer-directed, and consumer focused model as the ideal way to provide community-based services. We do some of that in this state. But we don't do enough. And I think we ought to be looking at our time of crisis as an opportunity. I mentioned this when I spoke at the Worcester hearing the other day. And I just wanted to expound on it a little bit today. And I know that these comments may not be welcomed within my own provider community, some folks within the disability community may not like it, but I think as we face this year's budget cuts and the tragic cuts that are coming next year, potentially, we really have an opportunity to take a hard look at how we provide services for individuals with disabilities in our community. It's an opportunity to look at is it the most effective that way that we currently have? We have different standards of eligibility for different disabilities across agencies. We have a multitude of agencies providing the same services that same groups of people. I'm not an advocate to consolidation, but I do believe that it's a better way for us to provide these services. And I clearly believe that this state made a major mistake when it didn't follow, money follows the person opportunities that the Federal government made available to states a number of years ago. I believe that all the money you spend on us, counted us all up and did the math and divided it, you know, each of us may have like $30,000 or $40,000 to determine what we want for our services. And I think that model should be the best data explored and considered. That may breakdown some of the large provider community we have, and that may effect jobs, that may take away some of the single disability concepts better known as SILOS. But we have an opportunity to take a tragedy, turn it around and make an honest, clear view of how we can do better. And we can do a whole lot better. As you've heard today, how ironic it is that we have a program in the state that one of the program programs in the nation that promotes a buy-in program for MassHealth for people with disabilities to go to work. But then we penalize them when they get married. How tragic is that? How illogical? It doesn't make sense. Why do we have programs that find people ineligible when they're $10 over a fiscal limit. Why don't we have a buy-in program for them. Why don't we make a buy-in program for all people with disabilities. So if you're 10 month the over income, you don't want common health to pay a $2 premium and continue your MassHealth services. That would be a fair process to go. I commonly am a common health recipient, I gladly pay my taxes and common health premium with the privilege and opportunities to have services that have enabled me to work for over 30 years now, have a home, have a family life and live a very productive life based on what I see as what I need and what I want. And that's what we should have for everybody. I should not be the exception to the rule. This should be available, encouraged and supported for everybody. So I ask you all to consider and I make this challenge to Secretary McGuire, and I got chastised by some folks that I was advocating for permission or a workgroup. I think now is the time, you know, take some of the brightest minds we have in the Commonwealth together. Start with consumers first. Then you can bring those academia types in and some of the professional providers, but start with the people first and ask them one simple question: If you had a chance to create this system the way you want it, how would you do it? I think you would be very surprised by the answers you receive. And I don't think it would come across with anything crazy and insane. Because as studies have shown in the past, for example, money follows a person and individual budgets, most people have been very conservative about reflecting what their needs are and honest about what their needs are. For me, just getting my PCA services, getting my oxygen delivery every two weeks and I'm a happy camper. I don't ask for much. You know? I'll gladly continue on that road. Thank you for this opportunity and again I commend all of you for hanging in here and listen to go all of us. Thank you. (Applause). JOHN WINSKE: I'll go down the line and ask the panelists if he they want to say anything and then I'll do a quick wrap up. COMMISSIONER CHARLES CARR: I just want to thank you all for coming here. I share Paul's sentiment in terms of the time you all spent in the seats waiting patiently for your turn to speak or just sitting and listening. We are listening and we're taking what we've heard now and have heard Olmstead meetings and going back and seeing what we can do. While I have the mic, I want to acknowledge in the audience a mentor of mine who I can't see because I cannot turn that far but I know he's here. One of the earliest fathers of the independent living center in the country, in Missouri Max and his wife have travelled here and the first founding Presidents and cofounded the national council for independent living. My mentor, Matt Stockwell. >> First of all, I want to recognize DPC because when we were mentioning the time line of these meetings and knowing the depth of the budget discussions we were in, I thought, oh, my God! How are we going to, you know, sit and listen in a time when we don't know what the outcome is going to be. And the truth is, even now that we know the outcome of yesterday, which at some level, you know, is only a part of the story that's still going on for the next year, it's just actually been very central to be in people's lives. Even though when we're sitting up here we're feeling embarrassed or distraught about some of the things you're saying. Nobody that's sitting at this table is unaware of what the right thing to do is. It's really tough to get past the SILOS and the rules and the laws that are generally, speaking not of our own making. But I think that we've been inspired to go at it again. There are both new ideas and no new ideas. Maybe there's another way to come at the problem. So I feel energized and am thankful for that at a time that's incredibly hard and I hear a willingness for people wanting to engage in problem solving and we're willing to do that. So I thank you all for that. (Applause). ANN HARTSTEIN: I've had the honor and the privilege of being at all three of the hearings that have been held and I found them to be incredibly enlightening as well as very supportive of all of us at this table find important. Thank you for telling us your personal experience. Thank you for sharing us in such an honest way. I will talk with Paul and look at his challenge and say, what would you do, let's talk about that and create the dialog and make it happen. Let's look at it from a cross-disability and cross-age perspective to make sure we're taking everything we have and doing what's right. I want to thank the DPC for doing this again, as well. It's a tough job to pull all of us together and I really appreciate the opportunity. Thank you all for coming. (Applause). COMMISSIONER HEIDI REED: Hi I'm Commissioner Reed with the Commission for the deaf and hard-of-hearing and this afternoon we heard testimony that was very powerful. It was very inspiring. And it created a lot of thought and a lot of sense. I remember when we started this process and started planning the meetings, MCB, MRC and the other agencies all worked together and we wanted to create a blueprint and develop a testimony that could be dataed and could be utilized for current and for the future. I appreciate all of the testimony that everybody brought today. All of the thoughtfulness they brought today and I appreciate you putting us on the path for influencing the future and the people here in Massachusetts. So thank you for your time. (Applause). >> I'm Commissioner Labreck with the Mass. Commission for the blind and I, too, want to echo our appreciation for all of you sharing your stories with us over the last three hearings. To DPC thank you so much for coordinating all of us and it's not often we're together in spite of all the challenges we've been facing. I have to say, each time I attend these meetings, I learn a lot and I think most importantly, we have learned that in spite of some of the challenges we face with some of these programs, when you're looking at policies and programs and improvements we can make, I think most important above all of those issues is that we're doing it collectively and I appreciate your respect for what we do. And we certainly offer to you our respect for some of the situations that you all have encountered and I think it's really important to continue the process for growth and for change in all of these programs and I really admire the work that all of you have done advocates. So thank you very much. (Applause). >> Thank you very much for the opportunity to be here today. I really want to thank you all for your honesty and for your continuing all the struggles and for staying with us as we go through the Olmstead. It's been a privilege to be here today and I want to thank Bill for inviting us to be here together. Like my colleagues have said before me, I've been at this a long time, but I continue to learn quite a bit from you and please stay with us and all of your great ideas for how we can work together to transform our systems, how we can work better together, and just as a note for the Department of Public Health, we recognize we have a lot of things we can do better, but we are committed to trying to transform the system to make things better and to work. Please continue to work with us, thank you very much. I appreciate the privilege to be here. (Applause). >> I'm Elin Howe at the Department of Developmental Services. I was really struck today by hearing from so many of you some common themes and some that I think are very consistent with our work in the department because people want to have choices, and don't want to live in an institutional setting. People want to be better supported in their communities and in their homes. When I think of our own department, we're well on our way I think to success with respect tole institutionalization and we've pulled 200 people out of nursing home facilities since 2008 which is great. However, we have 25,000 people served by our agency that live at home with families or on their own that need to be supported in the Commonwealth better. We've heard a lot about that same kind of thing from all of you and it just argues for good collaboration and good critiquing to be done by all of us of how we could in fact work on these common themes and really make the Commonwealth a better place for people who want to live in community settings. Thank you all for sharing your thoughts and for being with us today. (Applause). JOHN WINSKE: A want to thank the panelists. After living through one -- we now have to be to sit here, we'll listen and we'll take to heart the information you've brought. I also want to let everyone know one of the things DPC is pushing is more stimulus funding for states on our website, www.dpc.ma.org. We want to create more stimulus funding for the State and we would love you to sign onto that. And lastly, is I had the easy part. I had to show up here and -- they're the ones that pulled this altogether. And I want to thank the DPC staff for all their hard work and I want to thank the man behind it all. (Applause). >> Bill Allen: Thank you John, I do want to thank our staff, Holly and Robert in particular and Liz who is here for supporting us. I want to take a personal note and thank Robin for working on her birthday. Thank you Robin. (Applause). >> I got to the office this morning, tired, cranky because once again we didn't check the technological issues and anxious about what we were going to find today. One of them said, look at the bright side, Olmstead initiatives are over today. Well, folks this is really just the first stage. Because we intend to go through this testimony, find some of the common themes, document some things, put some things into a you know, a decision-type statement or a policy statement that we can then sit down in small groups with Jean and other folks up here and address things. How can we address the issues that Pat Ryan brought with the differences between SSI and SSDI. We all have to prepare for next year as an election year. We have to be able to take these statements out to our local reps our local Senatorial candidates. We have to start putting our elected people on the record about the issues that we think are important. That's part of all of our jobs for next year. Thank you all, thank you for the panel and we'll see you the next time. (Applause).