Health and Disability

Here's the testimony.  The Appendixes are not attached here for reasons oflength.  Appendix one was a list of the MDS numbers for folks wanting outfrom all the states represented on the Health Subcommittee.  Appendix 2 wasa summary of testimony given in Nashville TN (printed in Incitement);Appendix 3 was the list of CCA supporters -- all 700!  We picked up a fewmore at the hearing so we're updating that list before we send it out again.*********Good Morning.  I am Stephanie Thomas, a National Organizer for thegrassroots disability rights organization ADAPT.  I appreciate theopportunity to speak to you today.Over 17 years ago the Americans with Disabilities Act was signed into law.The disability community celebrated, but as we celebrated we realized thatthere were members of our community who were being left behind.  Stuck innursing homes and other institutions, they had neither liberty nor pursuitof happiness; they were virtual prisoners of a system that basically usesthem as a cash crop to draw down dollars for others to enjoy.  Many of themembers of the group I represent, ADAPT, have themselves been trapped innursing homes and other institutions and had to fight their way out to livein the community.  Many of the rest of us see this bleak picture as ourfuture, a future that haunts us every day.We have listened to our friends who have lived through beinginstitutionalized against their will.  They told us of living in an 8' by 8'room with another person - not of their choosing, being told when to get up,when to go to bed, what and when to eat.  We have gone to visit them andbeen told they can not leave the building, that we cannot go to see thembecause we raise up their hopes.  We have heard them explain how "your lifeis not your own."  We have heard them say "I would rather die than go back."I have never in my life heard someone say, "I am looking forward to movinginto a nursing home."  We know of children born with disabilities who havebeen forced away from their families into institutional placements becausethis was the only "support" option available to their families; childrenbelong in families, not in institutions.  Being institutionalized by one'sown choice is one thing, being trapped there because you have noalternatives is something very different.According to CMS' own numbers, nationally over 300,000 people, in nursinghomes alone, have expressed a preference for home and community services,yet they are stuck inside - unable to connect with any community optionsthat might exist.  8,787 are from NJ, 5,762 from GA.[1]   This does not evencount those trapped in other kinds of institutions, and those in thecommunity scraping by as they wait year after year to move up a waitinglist.  What I want to talk to you about today is a way to give those peoplechoices, and help the states and Federal government at the same time. Why dowe invest so much to keep people locked away?In 2005 ADAPT held a hearing in Nashville Tennessee and invited people whohad previously been institutionalized to come and testify.  People flockedfrom across the nation to give testimony, and the hearing lasted over sixhours.  You have all been given a DVD which summarizes what was said.  [2]People continue to have to move out of state - away from family andfriends - to be free. They fight brain washing and intimidation.  Theybelieve in themselves beyond what all around them believe, in spite of thedoubt and oppression from the current service system.  And these are thelucky ones.  Those who got out did not "get better" from their disabilities,they simply got out - and now live in the community with attendant servicesand supports.But I am not here to talk about how awful nursing homes or otherinstitutions are.  I am here to urge you to take action to give people areal choice in long term care, to pass Representative Danny Davis and JohnShimkus' bill HR 1621 The Community Choice Act, CCA, and to squarely addressthe institutional bias in Medicaid long term care.Medicaid has helped millions of people with disabilities of all ages; it hassaved people from alms houses and even death.  It has played a vital role inassisting people to achieve independence, dignity and health.  But it hasdone this with its hands tied behind its back.  The glaring problem ofinstitutional bias grows more pronounced every day as the awareness andvalues of our nation change, as the medical and scientific breakthroughspromise more independence and autonomy for children, adults and seniors withsignificant disabilities - yet Medicaid stays so wed to the institutionalmode.  Even Money Follows the Person, an important new demonstration programfunded in the DRA, requires that the person must be in an institution to getout and receive services.Our current system is backwards.  The institutional bias has led to a systemwherein the institutional service is mandated, and the community isoptional; where 67% of the Medicaid long term care funds go to theinstitutions and just 33% are left for community services, despite the factthat there are long waiting lists - sometimes as long as 10 years - forcommunity services.  Ironically, these same community services cost onlyabout 2/3 of their institutional equivalent.  We could be serving 3 peoplefor every 2 we are serving now, and doing it more humanely.Services are fragmented, based on disease categories and age, instead of onfunctional need.  If you have a traumatic brain injury at the age of 18 youmay be eligible for extensive support services, but if you have that sameinjury six years later you are out of luck.   If you have a spinal cordinjury, a boutique program may cover your needs, but if you have MultipleSclerosis and need the exact same tasks done your only option may be VillaSiesta Nursing Facility.  It makes absolutely no sense, unless you are intoByzantine policy history, and even then .We hear about fear of the "woodwork effect," an insulting term that actuallyrefers to unmet need of real live human beings. We are not cockroaches andthis is not pest control.  Let's look at the reality of this issue:  Peopleeligible for the Community Choice Act are people who are currently meetingthe income and medical necessity requirements of nursing home or otherinstitutional services.  They are people with significant disabilities.Without any services they will eventually endanger their health and wind upusing much more costly medical services: going without eating, staying inone position for too long, or consistently urinating or defecating onyourself leads to serious problems like malnutrition, bedsores, and worse.Getting by with no support services is not an option.  Forcing people to getby on nothing is not good policy and does not solve the money issue in thelong run.Many states would like to even the playing field, but when the FederalGovernment says you must fund nursing homes -- and if you want you can fundthese other community services, States are going to be darn sure the finitedollars they get go to covering the mandated programs first -- and communitywaiting lists will grow.We even believe the Community Choice Act would help to improve the servicesin nursing homes and other institutions because it would give them realcompetition.  If people knew they could go somewhere else, like their ownhome, nursing homes and other institutions would have to provide an optionpeople would freely choose.Over 700 national state and local organizations have signed on supportingthe Community Choice Act, from the American Medical Association to theNational Council on Independent Living; from the United States Conference ofCatholic Bishops, and Service Employees International Union to the NAACP andNOW; from the Oglala Sioux Nation to the Christopher and Dana ReeveFoundation and Not Dead Yet.  I could go on and on, but the list is includedwith my written testimony.WHAT THE COMMUNITY CHOICE ACT, HR 1621, DOESThis bill is based on a very simple concept.  By reforming Title XIX of theSocial Security Act (Medicaid) it takes a huge step toward ending theinstitutional bias.  It makes an existing mandated service more flexible, tomeet the needs of those who are currently eligible for its services.  TheCommunity Choice Act allows individuals eligible for services in a NursingFacility, Intermediate Care Facility for the Mentally Retarded (ICF-MR), orInstitutions for Mental Disease (IMD) the opportunity to choose instead anew alternative, "Community-based Attendant Services and Supports."  Itdoesn't force anyone to move out, as some have claimed.  It simply givespeople a choice.In addition, by providing an enhanced match and grants before October 2011when the benefit becomes permanent, the Community Choice Act offers statesfinancial assistance to reform their long term service and support system toprovide services in the most integrated setting.  This is already beginningto happen but in an ad-hoc, piecemeal basis, and often people must be ininstitutions in order to choose community services.Specifically what does this bill do?It provides community-based attendant services and supports that includeassistance with:* activities of daily living (eating, toileting, grooming, dressing,bathing, transferring),* instrumental activities of daily living (meal planning and preparation,managing finances, shopping, household chores, phoning, participating in thecommunity),* and health-related functions.CCA includes hands-on assistance, supervision and/or cueing (like remindingsomeone), as well as help to learn, keep and enhance skills to accomplishsuch activities.It requires services be provided in the most integrated setting appropriateto the needs of the individual.CCA provides Community-based Attendant Services and Supports that are:* based on functional need, rather than diagnosis or age;* provided in home or community settings like -- school, work, recreation orreligious facility;* selected, managed and controlled by the consumer of the services;* supplemented with backup and emergency attendant services;* furnished according to a service plan agreed to by the consumer;and that include voluntary training on selecting, managing and dismissingattendants.This bill allows consumers to choose among various service delivery modelsincluding vouchers, direct cash payments, fiscal agents and agencyproviders. All models are required to be consumer controlled and comply withfederal and state labor laws.For consumers who are not able to direct their own care independently, theCommunity Choice Act allows for an individual's representative to beauthorized by the consumer to assist.  A representative might be a friend,family member, guardian, or advocate.It allows health-related functions or tasks to be assigned to, delegated to,or performed by unlicensed personal attendants, according to state laws.It covers individuals' transition costs from a nursing facility, ICF-MR orIMD to a homesetting, for example: rent and utility deposits, bedding, basic kitchensupplies and othernecessities required for the transition.CCA serves individuals with incomes above the current institutional incomelimitation -- if a state chooses to waive this limitation to enhanceemployment potential.In addition, CCA provides for quality assurance programs which promoteconsumer control and satisfaction.The bill also provides a maintenance of effort requirement so that statescan not diminish more enriched programs already being provided.CCA allows enhanced match (up to 90% Federal funding) for individuals whosecosts exceed 150% of average nursing home costs.  This protects againstdiscrimination based on severity of disability, so people with moresignificant disabilities who require more services can still receiveservices on the community.For the first five years (2007 through 2011) after which the services becomepermanent, CCA provides enhanced matches (10% more federal funds each) forstates which:* begin planning activities for changing their long term care systems,and/or* include Community-based Attendant Services and Supports in their MedicaidState Plan.And, in the area of systems change:CCA provides grants for Systems Change Initiatives to help the statestransition from their current institutionally dominated service systems toones more focused on community based services and supports, guided by aConsumer Task Force.It also calls for national 5 -10 year demonstration project, in 5 states, toenhance coordination of services for individuals dually eligible forMedicaid AND Medicare.CONCLUSIONTen years ago I and hundreds of other members of the disability communitysat in the audience of this committee for a similar bill called MiCASSA.Mike Auberger and Justin Dart Jr. among others, testified to this Committee[several of you were here at that time too] about the urgent need to end theinstitutional bias in our long term care system.  At that time theCongressional Budget Office gave the bill a fiscal note that included costsfor people who are actually not eligible for the bill and services that arenot included in this bill.  Since then, the University of California at SanFrancisco has done a statistically valid and peer reviewed re-calculation ofthe cost and found it would be $1.4 to $3.7 billion dollars, a fraction ofthe original, erroneous CBO scoring.In those past 10 years there has been a rising frustration as Congressrefuses to act on this critical issue.For the women on this committee, and the women who staff this committee andit's members -- take heed.  The vast majority of people in nursing homes arewomen over the age of 65, the vast majority of the underpaid direct careworkers are women, and the vast majority of women who are providing longterm care to family and friends for "free" are women.  Is this issue sweptso completely under the rug because of this?  Who can say?  What we can sayis that most of you, men and women alike, will have to face this issue inthe near future from one of these angles - a recipient of personal careservices, a family provider, or through paid service provision.I faced it when my father-in-law came to live with my husband and me.  Adiabetic who had a stroke, he stubbed his toe and soon had to have firstthat leg amputated and then the other.  His eyesight was going and so washis memory of things like whether he left the stove on.  It would have beenso simple for him to go to a nursing home; "professionals" of various ilksurged us to do it again and again!  Despite the fact that my husband and Iboth have disabilities, we were able to keep him out of a nursing home, andliving with us - with the help of attendant services.  Today however, hewould be on the bottom of an over 40,000-person waiting list and it isdoubtful he would have reached the top before he passed away.  I will facethis again as my quadriplegic husband comes to need even a little moreassistance, as my parents get older and -- hopefully last but not least, asI too age and need more assistance.America is aging, and as America grays this issue looms larger and larger.It is not a question of if we will be dealing with long term care, it is aquestion of how we will be dealing with it.  We must pull our heads out ofthe sand and face the issue.  Like most monsters under the bed, once weconfront this we will find it is not what we feared.Long term care insurance may help some people, but for people who areeligible for the CCA, in other words eligible for Medicaid nursing home andother institutional services, it is not an option.  They can not afford it,and frankly the community options such insurance offers are often woefullyshort of the need - despite the fact that they often offer much moreexpansive and expensive institutional services as a "benefit."Vouchering the services for everyone is not the solution either.  As myfriend Doris put it "I don't want to have to become a small business, doingtaxes, recruiting workers and all that, just to be able to get out of bedand take a bath!"  Unlike many who would be eligible for services, Dorisdoes not have any kind of cognitive disabilities which would make such asolution even more complex.  And it is a lot easier to cut dollars forvouchers than to slash services for individuals.  When Senior and disabilityadvocates have sought vouchers, it has been as part of the system, not theentire system.  We do not support block grants; we support choice.Passage of the Community Choice Act would put these service choices in thehands of the individuals who are affected, not in the hands of a FederalBureaucracy which has ratcheted down on spending for Medicaid long termcare, despite the growing need.  We are facing a terrible example of thisratcheting down right now:  Even as CMS is encouraging states to assistpeople who want out of nursing homes or other institutions to move out (agood thing!), it has bizarrely decided to cut Case Management Services byalmost 70%.  This assistance is vital for people who have lost everythingonce they have been institutionalized, who need help getting everything theyneed to move out -- from a social security card to an apartment.  Thisdevastating cut shows the lack of understanding of the reality of people'slives - the distortion in priorities and understanding of what long termcare is all about.  You need to reverse this terrible decision on CaseManagement and reverse the overall institutional bias in Medicaid.  Passingthe Community Choice Act is an important piece in this overall effort.Thank you for the opportunity to speak today.  I would be happy to answerany questions.[1] See appendix for complete list. Or go towww.cms.hhs.gov/MDSPubQIandResR<wbr>ep/[2] See the ADAPT website www.adapt.org for a transcript of the entirehearing, or contact me at adapt@adapt.org.  Excerpts of the testimony areattached to my written testimony.