Hoisted on Our Own Petards? Information Bulletin #387 (4/14) “The Civil Rights Summit: 1964 We Shall Overcome 2014” conference takes place at the LBJ Library in Austin, Texas from 4/8 thru 4/10. Presidents Carter, Bush 41, Clinton, Bush 43 and Obama will speak. Big shing dings. The Civil Rights topics include “Heroes of the Civil Rights Movement” and “LBJ and MLK Fulfilling a Promise, Realizing a Dream.” Pretty heady – no? But the focus is not only race. Other civil rights topics include: “Women: How High is the Glass Ceiling?”; “Gay Marriage: A Civil Right?”; “Pathway to the American Dream: Immigration Policy in the 21st Century;” and “Education: the Ultimate Civil Right.” No dispute with those groups and issues. Also, we should not forget “Sports: Leveling the Playing Field” and “Music and Social Consciousness.” No idea how they squeezed in. Is something missing? Waldo? Yes, NOTHING about disability. Let’s be clear. Disability is NOT considered a disability on civil rights par with race, gender, gay marriage, or immigration. Forget the ADA’s 25 anniversary in 2015. Will these Presidents attend? Will the LBJ Foundation arrange for Sports for the disabled – oh, fear not, the national TV networks will cover it. Unreal? Outrageous? Depressing? Maybe the organizers thought Austin is too far for Lex Frieden to travel from Houston. After all, Lex was at the ADA’s signing with the President in 1990, as was Justin Dart, another Texan. Probably too far for Bob Kafka and Stephanie Thomas, two leading ADAPT organizers, to drive across I-30 from the east side of Austin. That’s probably why no person with a disability was not invited to be a speaker. Is it really believable that the organizers of the LBJ Library did not think about disability? No way, since Texas ADAPT is in the face of the legislature and city officials all the time. The Texas press covers it. How about something simpler? In the organizers’ minds, disability is not a civil right worthy of being, and not in fact, on par with race, gender, immigration, or sexual orientation. Disability is not as important or powerful as the other civil rights. As depressing as those thoughts may be, why have our “national disability leaders” been so publicly quiet? Why haven’t they publicly demanded the same respect as people with disabilities and the disability movement gives other civil rights groups? Can you imagine how John Lewis, Julian Bond, Andrew Young would have publicly reacted if they were as dissed as disability leaders have been? Oh well, maybe a pat on the head is all we deserve. Hmmmmmmm. Power concedes nothing without a struggle. Where is the disability POWER? Steve Gold, The Disability Odyssey continues Back issues of other Information Bulletins posted after 10/2013 can be found only at http://stevegoldada.blogspot.com/ Information Bulletins before 10/13 are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.

How Many Elderly and Disabled People Have to Be Injured and Die Before Advocates Act? Information Bulletin # 386 (3/2014) Here’s a surprise for elderly and disabled advocates: nursing homes are really dangerous places for people who live in them. For a number of years, there have been numerous federal government reports of injuries, physical abuses, and deaths of residents of nursing homes. We have reported on these reports quite often. See for example Information Bulletins “How Many more Disabled People Must be Injured in Nursing Homes;” “Disabled People and Physical Restraints in Nursing Homes;” “Abusing Drugs in Nursing Facilities;” “States ‘Miss’ (i.e., Fail to Report or Protect” People in Nursing Homes Who Are in Active Harm or Immediate Jeopardy.” Guess what? Another HHS Report, this one from the Office of Inspector General, and it’s entitled “Adverse Events in Skilled Nursing Faculties….” (OEI-06-11-00370). If anyone really cares, and sometimes we are not sure, here are some of the Findings: • 22% of the residents experienced “at least one adverse event during their stays.” • 79% were serious enough to require either prolonged nursing facility stay or hospitalization for acute level care. • 14% required “intervention to sustain the resident’s life.” • 6% “contributed to or resulted in resident death.” These total 22% “adverse events” include a shocking array: 37% related to medication (e.g., medication-induced delirium, excessive bleeding due to medication, hypoglycemia related to medication); 37% related to ongoing resident care (e.g., falls or other trauma with injury, dehydration, acute kidney injury, exacerbation of preexisting conditions resulting from an omission of care, pressure ulcers); and 26% related to infections (e.g., aspiration pneumonia, urinary tract infections). An extraordinary number of these “adverse events” are acknowledged to be “clearly preventable” or “likely preventable.” Even if our public officials do not care about these “adverse effects” to elderly or disabled people, they should (maybe) care about, at the least, financial costs of these “adverse events.” Here’s a quick breakdown – an additional $58 m in hospitalization costs for “adverse medication events,” $67 m in hospitalization costs for “adverse resident care events,” and an additional $83 m in hospitalization costs related to “adverse infection events.” Do our State and federal officials care that these costs for these hospitalizations were “clearly preventable” or “likely preventable”? The public reaction, your State’s reaction and especially the elderly and disabled advocates’ reaction sounds like “ho hum:” another report confirming the valueless lives of elderly and disabled people. KY, LA and SC had the largest number of “serious deficiencies per nursing home.” Some other big winners include AR, FL, GA, Il, IN, MI, MS, NC OK, WI, which had a large number of “total serious deficiencies.” What about the nursing facilities paying, at least, monetary fines for these “adverse events”? The “average fine” varied from a low of $1,559 to a high of one State at $38,851 and a major outlier of $70,872. Quite a number of “average fines” were in the range of under $10,000 (21 States). That’s chump change for nursing homes, far lower than even Medicaid reimbursement. Yes, despite the enormous progress we have made to increase home and community-based services, advocates for the elderly and disabled people have done a terrible job ending nursing home institutionalization. We know nearly all nursing home residents could be cared for in their homes with appropriate services. Get that word out! We’ve been afraid to point out how really dangerous nursing homes are! We need to post signs that say “Beware. Nursing Homes May Be Dangerous to your Health and Life. Avoid at ALL Cost.” Steve Gold, The Disability Odyssey continues Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. Information Bulletins will also be posted on my blog located at http://stevegoldada.blogspot.com/ To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.

Medigap Discriminates against PWDs under 65. Information Bulletin # 385 (022014). Did you know that the federal Supplemental Insurance for Medicare Part B (called Medigap) is required to be offered, by States, only to people 65 or older? For disabled people under 65 who receive Social Security Disability Insurance and Medicare, States are not required to offer Medigap. Even the nondiscrimination requirement in the Affordable Care Act for people with disabilities and preexisting conditions does not cover those individuals under 65 who receive Medicare only (i.e., people who do not also receive Medicaid as a “dual eligible”). It does not matter if they want to purchase a Medigap/Supplemental Insurance policy but live in a State that does not offer it. To summarize, States are allowed to discriminate if you are on Medicare only, under 65 and want to purchase a Medigap/Supplemental insurance policy. 80% of most Medicare Part B services are paid for by the federal government and the remaining 20% is paid for by the individual. People over 65 purchase a Supplemental insurance policy called Medigap to cover the 20%. Because there is no federal Medicare requirement for states to offer Medigap insurance to people under the age of 65 who are on Medicare, disabled people under 65 must pay the Part B noncovered 20% out of their own pockets. That can really be expensive and a deterrent to obtain health care. 21 states and the District of Columbia do not require and offer no Medigap insurance to people with disabilities under 65 on Medicare only. These are: Alabama, Alaska, Arizona, Arkansas, Idaho, Indiana, Iowa, Kentucky, Montana, Nebraska, Nevada, New Mexico, North Dakota, Ohio, Rhode Island, South Carolina, Utah, Virginia, Washington, Washington D.C., West Virginia, Wyoming 29 states however have decided to offer some type of Medigap insurance to people under 65. The amount they charge for this Medigap insurance may be significantly higher than the amount they charge for the same policy to people 65 or older. These States are: California*, Colorado, Connecticut, Delaware**, Florida, Georgia, Hawaii, Illinois, Kansas, Louisiana, Maine, Maryland, Massachusetts*, Michigan, Minnesota, Mississippi, Missouri, New Hampshire, New Jersey, New York, North Carolina, Oklahoma, Oregon, Pennsylvania, South Dakota, Tennessee, Texas, Vermont*, Wisconsin (* A Medigap policy isn’t available to people with End Stage Renal Disease (ESRD) under 65 ** A Medigap policy is only available to people with ESRD.) PEOPLE ON MEDICARE ONLY UNDER THE AGE OF 65 – WE NEED YOUR HELP! The Institute for Disability Access (1640A East 2nd St, Austin, Texas 78702, 512/442-0252) wants to find out if you have attempted to purchase a Medigap policy and have been denied or you have been charged an amount per month for insurance significantly higher than people 65 or older! If you have had to pay the 20% out of your own pocket or are in debt because of the 20% copay, they want to have that information too. The Institute is trying to ascertain the extent of the discrimination for people with disabilities under the age of 65 and on Medicare only in receiving insurance because of a PRE EXISTING CONDITION (now prohibited by the Affordable care Act). If you are willing to share your story please contact the Institute at the above address. Steve Gold, The Disability Odyssey continues Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. Information Bulletins will also be posted on my blog located at http://stevegoldada.blogspot.com/ To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.

State by State Data for Aged and Disabled: Institutional Bias? Information Bulletin #383 (October 2013) For the past ten years, we have tracked Medicaid funds by State by comparing community versus institution expenditures for people with disabilities. The FY 2011 data is finally available. This Information Bulletin will focus only on Older Adults and People with Physical Disabilities from both a six year (FY 2006-2011) perspective with a more detailed look at FY 2011. The “good” news is that in FY 2006, the national average of community versus institutional Medicaid expenditures was 29.6% to the community and 70.4% to the nursing homes. In FY 2011, it was 38.1% to 61.9%. Yes, it’s a slow, incremental change. And yes, inherent in the lethargy and pace are people being discriminated against in violation of the ADA. Without a serious national litigation attack, the arc of history will continue to bend, but very slowly. The nursing home industry is very powerful and contributes a lot of money to State elected officials. Given that most people want to live in the community and not nursing homes, the quid pro quo is obvious. The nursing home industry “contributes” to your elected State officials, who in return continue to raise the per diem nursing home reimbursements and continue to allocate Medicaid funds in a discriminatory manner. Unlike the for people with Developmental Disability, where 23 States spend more than 80% of their Medicaid expenditures in the community and only 7 States spend less than 50% in the community, for the Older Americans and People with Physical Disabilities only 1 State spent more than 80% in the community and 44 spent less than 50% in the community. Quite a difference! Here are the States that spent the least in the community in FY 2011 for A/PD, and therefore spent the most in the nursing homes. The worst/least Medicaid expenditures in the community was Rhode Island, followed by North and South Dakotas, Alabama, Delaware, Kentucky, New Hampshire, Mississippi, Indiana, Utah, and Pennsylvania. Six of these “worst” A/PD states either have an exceptionally strong nursing home industry or the State elected officials have a particular dislike of Old Adults and People With Physical Disabilities. Compare their community-based Medicaid expenditures for people with Developmental Disabilities versus Older Adults and People with Physical Disabilities. The following six states spent more than 72% of the Medicaid funds in the community for people with DD, while spending less than 22% in the community for people with A/PD: Alabama, Kentucky, Delaware, New Hampshire, Utah, and Pennsylvania. Quite a difference! Here are the States that spent the most in the community in FY 2011 for A/PD, and therefore spent the least in the nursing homes. New Mexico was far and away the best, followed by Minnesota, Washington, Alaska, Oregon, California, Texas and Wisconsin. These States are the winners. Advocates for Older Adults and people with Physical Disabilities should sit down in your State with the advocates for people with Developmental Disabilities to discuss their successful strategies. Advocates should ask their attorneys why they are not banging down the courthouse doors with lawsuits under the ADA and Olmstead. Steve Gold, The Disability Odyssey continues Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. Information Bulletins will also be posted on my blog located at http://stevegoldada.blogspot.com/ To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.

DOJ’s ADA Lawsuit Regarding Children in Nursing Homes. Information Bulletin #383 (8/2013) The U.S. Department of Justice, Disability Rights Section, filed a very important ADA/Olmstead lawsuit against the State of Florida on behalf nearly 200 children with disabilities. USA v. The State of Florida http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla. These children “entered nursing facilities as children and grew up in these institutions” and were “unnecessarily segregated from their communities.” This lawsuit also claimed that “children with significant medical needs who reside in the community” face “serious risk of unnecessary institutionalization” because of “repeated service reductions and lengthy and unduly burdensome recertification processes.” While the lawsuit focused on children, DOJ’s legal claims apply as well to adults in nursing facilities and at risk of institutionalization. Also, because many States have very similar ADA/Olmstead issues, we will point out some very important handles you might want to consider. 1. “Denial or Reduction of Medically Necessary Services.” DOJ asserted that Florida “in recent years unduly restricted the availability of many in-home services … through a state regulation that requires Medicaid services to ‘be furnished in a manner not primarily intended for the convenience of the recipient or recipient’s caretaker.” DOJ asserted that there were children in nursing facilities as a result of Florida’s limits on in-home services and/or a failure to provide such services. 2. “Stagnant Reimbursement Rates for Home Health Services.” DOJ noted that many people were unable to access home health services due to the low Medicaid rates paid for such services. One comparison that is very helpful was DOJ noting that the rate paid to nursing homes for these children increased in the last 9 years by 28%, but home health rates have not increased comparably. 3. “Insufficient Capacity in HCBS Waiver Programs.” After pointing out that most of these children are eligible for Waiver services in the community, due to lengthy waiting lists children have been forced to enter nursing homes. Even with additional State Waiver funds in 2013, more than95% of the people on waiting lists will not receive community-based services. 4. “Lack of Sufficient Community-Based Alternatives.” DOJ stated there were “very few providers of care to children with significant medical needs” in non-institutional settings. 5. “Failure to Offer Meaningful Opportunities to Move to the Community.” DOJ stated that “many of the Institutionalized Children remain in facilities for very long periods of time, even when it is apparent that their medical conditions would permit return to the community with appropriate supports. The continued stay of most of these children is the direct result of the State’s failure to actively identify more integrated service options for them.” Related to the ADA/Olmstead arguments and claims, DOJ noted that “providing services in integrated settings can be accommodated through reasonable modifications to the State’s existing services.” These five problems exist in many other States and cause adults (and children) to be unnecessarily segregated in nursing homes and other institutional settings, as well as to be at serious risk of institutionalization. Steve Gold, The Disability Odyssey continues Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. Information Bulletins will also be posted on my blog located at http://stevegoldada.blogspot.com/ To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.

HUD Issues Olmstead Guidance – Let’s Use It! Information Bulletin #382 (6/2013) On June 4, 2013 HUD released a “Statement … on the Role of Housing in Accomplishing the Goals of Olmstead.” Here is the link to HUD’s Statement: http://portal.hud.gov/hudportal/HUD?src=/press/press_releases_media_advisories/2013/HUDNo.13-086 Then click on “Read HUD’s new guidance” for the full Statement. This Information Bulletin quotes some points and suggests what advocates should look for and what can be done if your local and State recipients of HUD funds do not comply. HUD emphasizes the critical role housing plays in implementing the Olmstead and the ADA’s “most integrated setting” mandate by “increasing the housing opportunities for individuals with disabilities who are transitioning from, or at serious risk of entering, institutions, hospitals, nursing homes, adult care facilities, and other restrictive, segregated settings.” Advocates throughout the country have repeatedly testified that the lack of affordable, integrated, accessible housing is and has been a very significant barrier for people institutionalized (who cannot afford or locate housing because they have no money or their money goes to the institution) and people at risk of institutionalization (who, to stay out of an institution, must have accessible units in the community). Advocates know that HUD funded programs, in the past, have not focused on and have not required public recipients of HUD funds to focus on Olmstead and the ADA mandates for integration. The HUD Statement is intended to ensure compliance with Olmstead and the ADA. HUD recognizes that “a critical consideration in each state is the range of housing options available in the community for individuals with disabilities and whether those options are largely limited to living with other individuals with disabilities, or whether those options include substantial opportunities for individuals with disabilities to live and interact with individuals without disabilities.” HUD provides three examples of integrated housing: 1. “scattered-site apartments providing permanent supportive housing [that could be rented with Section 8 vouchers], [2] tenant-based rental assistance [a housing voucher authorized in the HOME Investment Partnership program, administered nationally at both the State and local levels] that enables individuals with disabilities to lease housing in integrated developments, and [3] apartments for individuals with various disabilities scattered throughout public and multifamily housing developments.” HUD told “public housing agencies and other HUD-assisted housing providers to work with state and local governments to provide integrated, affordable and accessible housing options for individuals with disabilities who are transitioning from, or at serious risk of entering, institutions or other segregated settings.” (Let’s hope they will work also with advocates and people with disabilities.) In another example [#4], HUD reminded both public housing agencies and other recipients of HUD assistance that “certain preferences [both with regards to actual housing and housing vouchers] that will enable individuals with disabilities … are permissible.” No more excuses that HUD-funded programs cannot establish preferences to assist institutionalized persons to return to the community or to prevent the institutionalization of people who are at risk of such institutionalization. A fifth example focused on “reasonable accommodations/ modifications (e.g., increasing the payment standard for Housing voucher for accessible units, or an extra bedroom for equipment or live-in aide). The Statement pointed out that “HUD requires recipients of HUD assistance [that includes public housing agencies, housing vouchers, the HOME tenant-based rental assistance vouchers, CDBG, and lots of other recipients] to take affirmative steps to further fair housing. The affirmative furthering fair housing (AFFH) obligation offers an opportunity for HUD and the recipients of HUD assistance to support Olmstead implementation by engaging in activities that will benefit individuals transitioning from institutions or at serious risk of institutionalization by providing integrated, affordable and accessible housing options in community-based settings.” What advocates should do to find out if HUD really means it. Here are a few possible strategies: 1. Do your local and state Consolidated Plans show that all of the above five examples are being implemented? Or even planned for the future? For example, are there “preferences” in both actual housing and housing choice vouchers (aka Section 8) for people institutionalized or at risk? 2. Do your local and/or State recipients of HOME Investment Partnership federal funds provide for tenant-based rental assistance for people institutionalized or at risk? Have any been actually provided in the past to end institutionalization? Are they needed in your State? 3. Has your public housing authority provided for scattered-site accessible housing throughout your community? Are more needed? Planned for? If there are people in institutions whom you, the advocates, know are institutionalized because of housing – either because they do not have funds for rent, security deposits, etc., or because they cannot locate accessible units they can afford, then your local and State recipients of HUD funds have failed to “affirmatively further fair housing.” These local and State recipients of HUD funds are in violation of the federal Fair Housing Act. HUD should be notified of these violations so it can remedy the situation and ensure people are not unnecessarily institutionalized. File a Complaint (be as specific as possible) with HUD Office of Fair Housing and Equal Opportunity in Washington, D.C. and send a copy of your Complaint to Jeanine Worden, Associate General Counsel, Jeanine.M.Worden@HUD.gov, or to Sara Pratt, Deputy Assistant Secretary for Enforcement, Sara.K.Prattt@HUD.gov. All italicizations are added. Steve Gold, The Disability Odyssey continues. Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. Information Bulletins will also be posted on my blog located at http://stevegoldada.blogspot.com/ To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.

Managed Care Long-Term Services and Supports. Information Bulletin #381 (6/ 2013) The Center for Medicare and Medicaid Services, the federal agency that funds Medicaid on 5/20/2013 issued “Guidance to States using 1115 Demonstrations or 1915(b) Waivers for Managed Long Term Services and Supports Programs” (MLTSS). A copy of this important new federal guidance can be found at http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Delivery-Systems/Downloads/1115-and-1915b-MLTSS-guidance.pdf We are quoting extensively from this CMS document because, for those States contemplating using Managed Care as the mechanism for Medicaid Expansion, as well as for those States that already include MLTSS, this document provides important advocacy handles. Before a State can have a 1115 Demonstration or 1915(b) waiver, CMS must review and approve a State’s application. If your State does not include and really provide for the following, then advocates should let CMS know their opposition to MLTSS. Here are some points that disability and elderly advocates might want to keep in mind. 1. CMS points out that LTSS includes “both home and community based services and institutional-based services.” The guidance encourages states to include both home and community based services and institutional programs in the managed care capitation rate. If your State is contemplating MLTSS, make sure both home and community services as well as institutional services are included and are the responsibility of the Managed Care Organization (MC0). Make sure that institutional-based services are not “carved out” in any way. Our assumption is if a managed care agency is financially responsible for institutional-based services, the MCO will figure out how to serve the person in the community, where on average it’s less expensive. If the MCO is not responsible for institutional services, the MCO will have a financial incentive to dump people with disabilities, especially with severe disabilities, into the institution. 2. The ADA and Olmstead requirements for services apply to MLTSS. CMS points out that “under the law [ADA], MLTSS must be delivered in the most integrated fashion, in the most integrated setting, and in a way that offers the greatest opportunities for active community and workforce participation.” Such a setting “enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible.” CMS writes that “States are encouraged to include in their benefit packages supports to enable workforce participation such as personal assistance services, supported employment and peer support services, as appropriate and desired by the participant.” If these kinds of supports are not included in your State’s managed care program, then you should advocate with CMS and State officials to get your State to include them. If CMS is not responsive to your concerns, please let us know asap! 3. Under “alignment of payment structures and goals,” CMS requires States “establish rates that support the goals and objectives of their MLTSS program… In keeping with the intent of the ADA and Olmstead decision, payment structures must encourage the delivery of community-based services and not provide disincentives, intended or not, for the provision of services in home and community-based settings.” A number of advocates have voiced serious concerns that the more severely disabled persons will not be able to live in the community because the capitation rates (the dollar amount per person the MCO receives) are too low to cover all the community needs and supports. CMS requires that “State payment structures, systems and review mechanisms must ensure that participants at all levels of need and all types of disabilities have the opportunity to choose their MLTSS providers and have appropriate access to community-based services.” There cannot be any doubt that “States must employ financial incentives that achieve desired outcomes, [such a] provision of services in the most integrated settings and consumer satisfaction.” It is a failure for States not to set rates that ensure the most severely disabled persons have a meaningful choice to reside in the community. States that fail will have “financial penalties… or return of a payment if a MCO does not achieve required outcomes for the provision of services in the most integrated settings.” 4. The State Medicaid agency has the legal duty to “evaluate whether payment rates and structures are adequate to achieve participant access to quality providers for covered services.” 5. “Person-centered” needs assessment, service planning and service coordination are required. CMS urges that MLTSS “should encourage participant self-determination and provide opportunities for self-direction of services.” If your State provides self-direction in its existing fee for service Medicaid program, CMS states that the MLTSS “programs are expected to continue them,” and if your State does not currently offer self-direction, “it should consider providing the opportunity for self-direction within their MLTSS program. 6. “Stakeholders” [which includes us – disability and elderly advocates] must be formally involved, including cross-disability representatives, in the planning, implementation and oversight of the MLTSS. You must be at the table when the State Medicaid agency is developing the contract for MLTSS. The contract sets the enforceable requirements. ALL of the above five points are just words if the contract does not require the provision of these points. In addition to these six points, the State’s contracts with managed care organization should include requirements that managed care staff working with MLTSS programs receive Olmstead training to understand the importance of serving persons outside of the institution. Steve Gold, The Disability Odyssey continues Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. Information Bulletins will also be posted on my blog located at http://stevegoldada.blogspot.com/ To contact Steve Gold directly, write to stevegoldada1@gmail.com or call 215-627-7100. Ext 227.