More than 5% Accessible Housing Units. Information Bulletin #396 (12/2014) Under Section 504 of the Rehabilitation Act of 1973, recipients of “federal financial assistance” were prohibited from discriminating. It took nearly 15 years for HUD to finally promulgate what nondiscrimination meant in the housing arena. Then in 1988, HUD’s federal regulations set a floor – 5% of federally funded housing had to be mobility accessible for people with mobility disabilities (and another 1% for hearing and visual disabilities). For a number of years, the disability community could not enforce the 5% minimum, even though we believed it was grossly too low and inadequate. Even with the 1990 and 2000 census, we did not have a handle to push higher than 5%. Now, with the 2010 census we can. The primary federal financial assistance housing programs that the 2010 census impacts are the HOME Investment Partnership, Project Based Housing Vouchers, and Public Housing. HUD’s federal regulation 24 CFR § 8.22 (c ) states that HUD “may prescribe a high percentage … upon request … based upon demonstration … based on census data….” Disability Advocates – here’s a suggested battle plan. First, you must use the Census’s “American Fact Finder” and determine for your county the percentage of persons “with an ambulatory difficulty” whose incomes are under the poverty levels. It is critical to remember that this data does NOT include persons institutionalized in nursing homes. Second, you must contact your local HUD FHEO office and request at the least that prospectively HUD enforce the increased percentages. To wet your interest, here are some preliminary results: Philadelphia, PA, 13.2%; Washington county, PA.15.3%, Chicago, Ill, 9.4%; Baltimore, 13.8%; Orleans Parish, New Orleans, 10.65%; El Paso, TX 9.8%; Lafayette Parish in Louisiana, 9.46%. No more excuses! The data is now available. It’s up to you, the advocates, to make it happen. 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 10/2013 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.

Medicaid Expansion: Real People, Real Lives, Real Injuries. Information Bulletin # 395 (7/2014). Too often, advocates get bogged down with “policy” formulations and do not focus on the people who are affected by these policies. Here is what is at stake for non-elderly people with incomes below 133% of the poverty level in the 24 States that have not opted to receive 100% federal reimbursement for Medicaid expansion since January 1, 2014. Chart #1 below lists the 24 States. On July 2, the White House Council of Economic Advisers (CEA) issued a report, Missed Opportunities: the Consequences of State Decisions Not to Expand Medicaid, which details the impact of states’ decisions to not expand Medicaid under the Affordable Care Act. We are talking about a lot of people whose health care needs are put at risk because the 24 States have refused to expand Medicaid: 1. Preventive health care will not occur each year - a. for 214,000 women between the ages of 50 and 64 who would have received mammograms; b. for 345,000 women who would have received pap smears, and c. for 829,000 men and women who would have received cholesterol-level screenings. 2. Also, 651,000 people who would have received “all needed care” they felt they needed during the year. 3. If Medicaid had been expanded in every State, an additional 1.4 million people would likely have had a primary care visit at a physician’s office. See Chart #2 below for a breakdown by State. Real people, real lives, real injuries. Becausee these 24 States have not accepted Medicaid expansion, 255,000 people risked facing catastrophic out-of-pocket medical expenses which would have otherwise been covered with Medicaid. Even without catastrophic medical expenses, there would have been 810,000 fewer people who had trouble paying rent and utilities because they had to pay for medical bills. Medicaid expansion thus helps people to have greater financial security in addition to improved access to health care. Finally, in addition to individuals receiving health care, let’s not forget the impact on your States’ economies because your State has opted not to have Medicaid expansion. The impact on State economies is stark: those 24 States that have not expanded since July 1, 2014 will lose $88 million in Federal payments through calendar year 2016. Those 26 States that have expanded will receive $84 million over that period. Because Medicaid expansion is funded through our federal taxes, tax-payers in the 24 States that have not opted to expand Medicaid are subsidizing the 26 States that have expanded. The federal government pays 100% of the health costs for Medicaid expansion for three years – 2014 through 2016. Thereafter, the federal government pays about 90%. It is really hard to believe and understand why any State would not accept 100% federal funds for health care for the lowest income people, other than a real enmity toward low-income people, especially when a State could opt out of Medicaid expansion for whatever reason. Advocates in the 24 States that have not expanded Medicaid should think about whether your State accepts federal highway and other infra-structure funds for bridge repairs. We bet none of these 24 States turn down those funds. Does your State turn down federal special education funds? Maybe we should not mention food stamps for fear that the apparent hatred toward low-income people would be extended to those federal funds too. Chart # 1 - Number of people denied health care in States without Medicaid xpansion Alabama 235,000 Alaska 26,000 Florida 848,000 Georgia 478.000 Idaho 55,000 Indiana 262,000 Kansas 100,000 Louisiana 265,000 Maine 28,000 Mississippi 165,000 Missouri 253,000 Montana 38,000 Nebraska 48,000 North Carolina 377,000 Oklahoma 123,000 Pennsylvania 305,000 South Carolina 198,000 South Dakota 26,000 Tennessee 234,000 Texas 1,208,000 Utah 74,000 Virginia 210,000 Wisconsin 120,000 Wyoming 16,000 Chart #2 States Without Medicaid Expansion and People who gave had No Mammograms No Pap Smears No Cholesterol Screening In Past 12 months In Past 12 Months In Past 12 Months Alabama 9,300 14,200 34,200 Alaska 900 1,500 3,800 Florida 35,300 52,000 123,000 Georgia 17,000 28,900 69,600 Idaho 2,300 3,300 8,000 Indiana 9,000 15,200 38,200 Kansas 3,100 5,800 14,600 Louisiana 10,400 16,000 38,600 Maine 1,300 1,700 4,100 Mississippi 6,200 9,700 24,000 Missouri 9,400 14,900 36,900 Montana 1,600 2,400 5,500 Nebraska 1,600 2,900 7,000 North Carolina 13,900 23,000 54,900 Oklahoma 4,800 7,300 17,900 Pennsylvania 11,100 17,600 44,400 South Carolina 8,000 12,000 28,800 South Dakota 900 1,500 3,800 Tennessee 9,500 14,000 34,100 Texas 44,100 75,200 176,000 Utah 1,900 4,500 10,800 Virginia 8,000 1,300 30,600 Wisconsin 3,800 6,700 17,500 Wyoming 700 1,100 2,300 Real people, real lives, real injuries. 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 10/2013 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.

People With Disabilities Institutionalized in Nursing Homes, Information Bulletin #394 (7/2014). Think about the warmth and coziness conjured up by the term “nursing homes.” Much of the public and as well as the press think that “nursing homes” are the places where people must go in order to receive intensive nursing care. Let’s take a look at the extremely effective branding of a product: nursing homes. As of December 2013, 69.4% of the nation’s 15,666 nursing homes were classified as “for profit,” only 24.7% were classified as “nonprofit,” and 5.9% were classified as “government/public facilities.” In Alabama, Arizona, California, Connecticut, Louisiana, Ohio, Oklahoma, Oregon, Texas and Utah, more than 80% of the nursing homes are “for profit.” More than 55% of these 15,666 facilities were owned by multi-nursing home chains and corporations, with each corporation having two or more nursing facilities under one ownership or operation. Nursing homes have not been “mom and pop” operations for many years. Nursing homes are a $74 billion Medicaid funded industry. Medicaid certifies about 90% of the nursing facilities. Most of these facilities are BIG BUSINESS funded by public taxes and dollars. Think BIG LOBBIES using people with disabilities as cash cows to make profits. Most of these are large institutions – not “homes,” not even “group homes” of only a few people. This is not surprising since “for profit” means making money for the owners. That means meeting the interests of the owners and not the residents in terms of size and scale. The “nonprofits” are really not that much different from the “for profits” with regard to their size. They are not “homes.” Don’t be fooled by the label “nonprofit.” Executive Directors’ salaries in nonprofit nursing homes can be hundreds of thousands of dollars or more. Senior staff in “nonprofits” also make a lot of money. What about the residents in Medicaid funded-nursing homes? They are all people with disabilities. Regardless of their age, in order to be eligible for Medicaid funded nursing homes, people must meet the State’s criteria disability consisting of physical and/or cognitive impairments that limit activities of daily living. Elderly people cannot just decide that they want to enter a Medicaid-funded nursing facility, like they would a hotel. They must have a certain number of impairments, just like younger people with disabilities. With regards to the alleged doctors, let’s examine their affiliations with the facilities. Most people in nursing homes do not know they can have their own doctors continue to treat them there. Rather, the nursing homes have an understanding or deal with certain doctors who “care for” all the residents. The result is that the doctors in nursing homes are beholden to the nursing facility, and the residents/patients in these facilities are cash cows for the doctors. These doctors do not view the residents as their patients because in order for the doctors to continue to be reimbursed, they must cater to the nursing home proprietors. We have seen the “drive by” medical care that these alleged medical professionals provide. They bill Medicaid for hundreds of alleged patient visits, as well as care and treatment for all the nursing home patients just in a few hours. In reality, they rarely even see the patients but just sign hundreds of charts. What about the “nursing” part of “nursing homes”? The general public, the press, and elected officials must think that people with disabilities, regardless of their age, really need to be in a nursing facility because they need direct care that can be provided only from well-trained health care staff in a nursing facility. Hmm. Let’s look at how much time measured in hours per patient per day residents actually receive “nursing” care and services. Nationally, the average of “total direct care” staff hours provided per patient per day is 3.71 – that a total for registered nurses (RNs), licensed practicing nurses (LPNs), and aides. However, of this average 3.71 hours per nursing home, less than half an hour is provided by a RN and about three quarters of an hour is provided by an LPN, who generally have only one year of training. Does anyone really think that a “visiting nurse” in one’s home could not provide the same patient care in the same amount of time, but much more cheaply? Who is providing this “direct care if not the RNs or LPNs?” It is the “aides.” These are the people who provide the assistance with residents’ daily living needs – transferring them from their beds, assisting them with toileting, showering, dressing, and other such needs. Yes, the assistance personal attendants provide in the nursing homes is the same assistance with activities of daily living that people with disabilities receive in the community. So why has the nursing home industry been so successful in deceiving the public? First, the nursing home industry is well-funded; they are active lobbyists and contributors to your State legislators and Governor. They play this system much better and more effectively than the community-based community-care providers. Second, advocates for the elderly and non-elderly disabled people have not developed or engaged in effective activism and advocacy. There have not been the press or television stories that were produced about institutions for people with intellectual or mental disabilities, showing how absolutely terrible they were. Third, once people with disabilities enter nursing homes, especially if they are elderly, they give up hope that they can live in the community. Their families do not know about or believe they can receive appropriate or the same services in the community that they think nursing facilities provide, and they do not fight for those services. We need a new Frederick Douglass. He knew that power concedes nothing without struggle. Where are you? 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 10/2013 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.

Olmstead 15th Anniversary [Part Four] - How Much Progress Has Your State Made? Information Bulletin # 394 (6/2014). In the previous three Olmstead 15th Anniversary Information Bulletins, we focused entirely on Medicaid-funded nursing homes and community-based programs. We have looked only at programs for people of any age with primarily physical disabilities of any age and who would meet the eligibility criteria for nursing homes. We saw that between Fiscal Years (FY) 2000 and 2012, there was a significant national increase in Medicaid community-based expenditures from 18.7% to 38.8%. That is an increase from $9 billion to $22 billion – not chopped liver! People with developmental disabilities also benefit from the Olmstead decision and the ADA’s “most integrated setting” regulation requirement. People with developmental disabilities do not meet the eligibility criteria for nursing homes and should not be in those institutions. We can make an independent comparison of institutional versus community spending for people with developmental disabilities. Historically, the two systems – one for people with developmental disabilities and the other for the aged and people with primarily physical disabilities – have responded to Olmstead and the ADA’s mandate quite differently. For example, for people with developmental disabilities between FY 2000 and FY 2012, there was a significant national increase in Medicaid community-based expenditures from 49.0% to 69.6%. That 20% jump is about the same as the increase in community spending for people with physical disabilities. Chart One presents 2012 Developmental Disabilities (DD) data by State in the community. What is particularly impressive is that 14 States in FY 2012 spent more than 90% of their total Long Term Services and Supports (LTSS) (i.e., the combined institutional and community expenditures) for DD in the community. See Chart One – 2012 % of LTSS Medicaid Expenditures Went to ID Community Programs. It is also fascinating is to compare by State the FY 2012 expenditure of LTSS for people with non-DD disabilities with the expenditure for people with DD. See Chart Two. Why, for example, does Alabama allocate 96.4% in the community for persons with developmental disabilities, but only 15.2% in the community for the aged and people with physical disabilities? Further, Michigan and Maryland each allocate 100% in the community for persons with developmental disabilities, but spend only 23% in the community for the aged and people with physical disabilities. Similarly, New Hampshire allocates 98% in the community for people with developmental disabilities but only 19% for the aged and people with physical disabilities, and Rhode Island spends 96% for people with developmental disabilities in the community but only 19% for the aged and people with physical disabilities in the community. We could go on and on – see Georgia, Connecticut, but you see the discrepancy. However, there are several big differences that may explain this discrepancy. First, in 2000, the institutional side (Intermediate Care Facilities/MR) and the community side (MR Waivers) each expended about $10 b. On one hand, $49b (80% of the entire LTSS) of Medicaid spending for the aged and people with physical disabilities went to the institutional side. On the other hand, institutions and community Medicaid spending for people with developmental disabilities started off nearly equal. It’s like a hundred yard dash with some folks starting at the mid-point and others starting far behind. Second, the institutional component of ICF/ID (Intellectual/Developmental Disabilities) in 2012 is quite different from nursing homes, the institutional component for people with physical disabilities regardless. That is, 58% of the institutions for developmental disability community were publicly owned in comparison to the nursing homes of which only 6% are publicly owned and nearly 70% are for profit. This difference results in political differences because, unfortunately, money and contributions to state-elected officials play an important role in how Medicaid funds are expended between the institutions and the community. Third, the exact opposite occurs on the community side for people with developmental disabilities. Since 2000, most people with developmental disabilities have moved from public institutions to primarily private provider-based group homes and most people with physical disabilities have moved from private institutions (nursing homes) to their own apartments and homes. The providers of community-based services are for developmentally disabled individuals very strong both financially and politically in the same way that institutional nursing homes proprietors are strong (regardless of whether the nursing home is “for profit” or allegedly “nonprofit”). Fourth, advocates actually need to go into institutions to encourage and help people transition out of the institutions. I am regularly amazed when I ask advocates for the aging and people with physical disabilities community about people in institutions who want to reside in the community and am told they do not know those people. Advocates should also encourage people to stay in their own homes and communities. “Closing the front door” before a person is institutionalized is an effective strategy to which your State Medicaid administrators should be receptive – if you push them. Neither the Olmstead decision or the ADA are self-executing. They are enforced only when advocates act. Chart One -2012 % of DD LTSS in the community Alabama 96.40% Alaska 98.10% Arizona 100% Arkansas 50.40% California 74.70% Colorado 89.60% Connecticut 74.20% Delaware 69.80% Florida 71.50% Georgia 90.30% Hawaii 92.10% Idaho 73.60% Illinois 47.80% Indiana 62.30% Iowa 56.10% Kansas 84.10% Kentucky 72.50% Louisiana 48.30% Maine 80.80% Maryland 100% Massachusetts 98.50% Michigan 100% Minnesota 86.00% Mississippi 14.00% Missouri 59.80% Montana 88.60% Nebraska 79.50% Nevada 79.90% New Hampshire 98.30% New Jersey 51.70% New Mexico 91.80% New York 62.00% North Carolina 56.90% North Dakota 58.00% Ohio 62.10% Oklahoma 71.10% Oregon 100% Pennsylvania 76.70% Rhode Island 95.70% South Carolina 65.30% South Dakota 77.60% Tennessee 72.80% Texas 50.00% Utah 74.90% Vermont 99.20% Virginia 66.90% Washington 83.80% Dist. of Columbia 68.00% West Virginia 82.80% Wisconsin 79.90% Wyoming 82.60% United States 69.60% Chart Two - 2012 % of A/PD LTSS in the community Alabama 15.2% Alaska 62.4% Arizona 42.0% Arkansas 31.7% California 57.1% Colorado 45.5% Connecticut 25.8% Delaware 21.3% Florida 23.0% Georgia 29.0% Hawaii n/a Idaho 43.5% Illinois 31.9% Indiana 18.7% Iowa 26.6% Kansas 31.5% Kentucky 14.4% Louisiana 30.0% Maine 32.3% Maryland 23.4% Massachusetts 44.7% Michigan 23.6% Minnesota 65.4% Mississippi 22.2% Missouri 37.4% Montana 36.2% Nebraska 23.6% Nevada 33.5% New Hampshire 18.8% New Jersey 15.7% New Mexico n/a New York 45.9% North Carolina 39.8% North Dakota 14.0% Ohio 32.4% Oklahoma 30.8% Oregon 60.7% Pennsylvania 24.7% Rhode Island 18.8% South Carolina 26.2% South Dakota 16.3% Tennessee 31.3% Texas 50.1% Utah 21.9% Vermont 44.7% Virginia 43.9% Washington 61.7% Dist. of Columbia 54.1% West Virginia 31.3% Wisconsin 47.9% Wyoming 20.0% United States 38.8% Again, thanks to Truven Health Analytics for the underlying data. 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 10/2013 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.

Olmstead 15th Anniversary [Part Three] - How Much Progress Has Your State Made? Information Bulletin # 392 (6/2014). In this Olmstead 15th Anniversary Information Bulletin, we will compare the Medicaid expenditures State-by-State for Long Term Services and Supports (LTSS), including expenditures on both nursing homes (institutions) and community-based programs. In Fiscal Year 2000, the first year after the Supreme Court held that “unnecessary isolation” was discrimination against people with disabilities. States varied quite a lot in the percentage of their LTSS spending that went to the community-based programs. Nationally, only 18.7% of LTSS spending went to the community-based programs and the remainder went to programs that segregate people with disabilities in nursing homes. The worst States in 2000, those that expended less than 10% of their LTSS in the community were Illinois, Indiana, Louisiana (5.7%), Mississippi (6.7%), New Hampshire, North Dakota (3.4%), Pennsylvania (3.2%), Rhode Island, South Dakota, Tennessee (0.5%), Utah, and Wyoming. Chart One below lists the rates for each State. By FY 2012, the percentage of Medicaid LTSS expenditures in the community had increased to 38.8%. There were only four States that had under 10% Medicaid community-based expenditures: Alabama, Indiana, Kentucky, and South Dakota. However, another four States were listed as having zero expenditure in the community: Arizona, Hawaii, Rhode Island and Tennessee. Chart Two below lists the rates for each State. By FY 2012, many of the worst States from FY 2000 had made really significant progress in funding community-based services, including, Illinois, Louisiana, Mississippi, and Pennsylvania. The improvement in these States demonstrates a real commitment to changing their allocations to comply with Olmstead. Obviously, there has been a lot of progress. However, it is important to understand that the spending on the institutional side of the leger has not been stationary between FY 2000 and FY 2012. In terms of total Medicaid dollar expenditures during these years, the institutional and community sides each increased by $12 billion. Chart three below lists the increases in each State. What is particularly interesting about the total dollar expenditures is that some States that decreased their total combined institutional and nursing home expenditures between FY 2000 and FY 2012 were also able to increase their total community-based Medicaid expenditures. These States, which should receive exceptional kudos, include Minnesota (reduced institutional expenditures by $32 m and increased community by $1 b), Nebraska (reduced institutional expenditures by $21 m and increased community by $13 m), New Mexico (reduced institutional expenditures by $162 m and increased community by $7 m), Pennsylvania (reduced institutional expenditures by $231 m and increased community by $737 m), Tennessee (reduced institutional expenditures by $72 m and also decreased community by $6 m). However, there were States that increased their total institutional expenditures and while actually reducing their community-based expenditures between FY 2000 and FY 2012. These States, were Connecticut (increased institutional expenditures by $273 m and decreased community by $16 m), Kentucky (increased institutional expenditures by $284 m and decreased community by $70 m), Rhode Island (increased institutional expenditures by $75 m and decreased community by $20 m). We are very disappointed and surprised with those States that have actually decreased their total Medicaid expenditures for community-based programs. How can they be complying with the Olmstead decision? Are all of the people with disabilities who want to live in the community able to do so? Are there any people with disabilities still at risk of unnecessary isolation? What about those States that in FY 2012 still spent less than 10% of their LTSS on community-based services? How do they comply with Olmstead? How do they prevent unnecessary isolation? What are the advocates for the aging and the advocates for physically disabled people doing in those States? It is difficult to believe that States are complying with the Olmstead and the ADA when they are spending such a small percentage of their LTSS on community-based programs. It is difficult to reconcile a commitment to ending unnecessary isolation with many States’ increased spending on institutions that segregate people with disabilities. Advocates for the aging and physically disabled people regardless of their ages must speak up and demand full compliance with Olmstead and a real commitment to community-based programs. Chart One – % FY 2000 State Medicaid Expenditures In Community Alabama 11.0% Alaska 28.8% Arizona 14.1% Arkansas 30.0% California 22.6% Colorado 26.9% Connecticut 16.9% Delaware 13.1% Florida 10.1% Georgia 14.2% Hawaii 14.2% Idaho 26.0% Illinois 8.5% Indiana 7.9% Iowa 11.1% Kansas 26.6% Kentucky 22.6% Louisiana 5.7% Maine 17.1% Maryland 12.4% Massachusetts 17.3% Michigan 11.3% Minnesota 21.8% Mississippi 6.7% Missouri 20.9% Montana 24.9% Nebraska 16.9% Nevada 17.1% New Hampshire 9.9% New Jersey 10.0% New Mexico 11.4% New York 29.9% North Carolina 34.6% North Dakota 3.4% Ohio 11.7% Oklahoma 16.3% Oregon 48.0% Pennsylvania 3.2% Rhode Island 7.5% South Carolina 22.5% South Dakota 6.2% Tennessee 0.5% Texas 28.5% Utah 8.3% Vermont 23.1% Virginia 17.0% Washington 39.4% Washington DC 11.4% West Virginia 30.2% Wisconsin 19.6% Wyoming 9.0% U.S. 18.7% Chart Two -% FY 2012 State Medicaid Expenditures In Community Alabama 9.6% Alaska 62.4% Arizona 1.0% Arkansas 23.5% California 33.6% Colorado 26.7% Connecticut 12.8% Delaware 13.9% Florida 13.7% Georgia 25.0% Hawaii 0.0% Idaho 42.8% Illinois 30.6% Indiana 7.6% Iowa 14.8% Kansas 29.7% Kentucky 9.8% Louisiana 27.2% Maine 28.3% Maryland 18.0% Massachusetts 34.1% Michigan 21.6% Minnesota 61.9% Mississippi 21.6% Missouri 35.2% Montana 31.2% Nebraska 20.5% Nevada 28.3% New Hampshire 15.1% New Jersey 13.3% New Mexico 91.3% New York 35.8% North Carolina 35.1% North Dakota 10.8% Ohio 22.5% Oklahoma 28.4% Oregon 59.3% Pennsylvania 19.4% Rhode Island 0.0% South Carolina 23.5% South Dakota 9.8% Tennessee 0.0% Texas 46.3% Utah 17.0% Vermont 20.0% Virginia 42.4% Washington 60.6% Dist. of Columbia 52.1% West Virginia 25.9% Wisconsin 44.4% Wyoming 13.8% U.S. 38.8% Chart Three – Dollar Increases Between Between 2000 and 2012 in Nursing Homes and in Community Nursing Homes Community Alabama $255,754,231 $16,285,283 Alaska $69,148,946 $189,789,166 Arizona $475,688,312 $2,662,490 Arkansas $360,783,181 $74,068,697 California $1,998,500,869 $1,478,460,824 Colorado $257,127,331 $91,947,814 Connecticut $272,916,597 (-$15,486,259) Delaware $7,535,638 $2,118,904 Florida $1,220,177,047 $268,218,703 Georgia $462,313,596 $280,885,524 Hawaii (-$147,584,084) (-$24,655,070) Idaho $102,276,230 $120,753,121 Illinois $187,080,589 $611,247,113 Indiana $705,632,599 $54,927,012 Iowa $73,325,212 $37,289,090 Kansas $92,238,026 $59,833,671 Kentucky $284,788,789 (-$70,531,195) Louisiana $346,159,432 $291,254,656 Maine $25,352,670 $47,704,797 Maryland $509,910,527 $160,185,965 Massachusetts $429,138,089 $650,078,374 Michigan $116,400,288 $269,903,742 Minnesota (-$32,379,189) $1,091,003,677 Mississippi $373,034,866 $181,099,249 Missouri $213,203,966 $317,567,671 Montana $33,015,318 $30,784,373 Nebraska (-$21,419,330) $13,345,040 Nevada $105,515,937 $57,853,840 New Hampshire $110,248,344 $33,967,631 New Jersey $177,204,426 $98,487,894 New Mexico (-$161,591,525) $7,211,233 New York $620,173,358 $1,181,029,041 North Carolina $390,328,061 $222,000,788 North Dakota $22,665,290 $18,278,558 Ohio $274,931,768 $421,962,758 Oklahoma $185,939,465 $136,516,642 Oregon $90,763,291 $260,920,140 Pennsylvania (-$231,182,111) $737,149,759 Rhode Island $75,641,677 (-$20,073,338) South Carolina $195,064,443 $66,138,140 South Dakota $31,717,171 $7,781,163 Tennessee (-$72,734,458) (-$5,487,090) Texas $959,781,368 $1,493,636,696 Utah $80,111,282 $27,157,320 Vermont $39,090,314 $5,830,447 Virginia $332,358,019 $504,163,948 Washington $4,179,217 $553,176,628 DC $76,178,032 $217,231,477 West Virginia $259,072,260 $67,828,539 Wisconsin $113,425,426 $587,263,336 Wyoming $52,403,886 $11,347,656 U.S. $12,401,404,687 $12,922,115,638 Thanks again to Truven Health Analytics for compiling the data. 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 10/2013 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.

Olmstead 15th Anniversary [Part Two] - How Much Progress Has Your State Made? Information Bulletin # 391 (6/2014). In the previous Information Bulletin, Olmstead 15th Anniversary [Part One] - How Much Progress Has Your State Made? we provided a State-by-State breakdown of Medicaid Long Term Services and Supports for both institutional expenditures and community-based Medicaid expenditures, comparing Fiscal Years 2000 and 2012. In this Information Bulletin, we will look at the biggest institution for people with disabilities – nursing homes. The 2000 census reports that there were 1,720,500 persons of all ages with disabilities residing in nursing homes. [Remember, “aged” people must be disabled in order to receive Medicaid reimbursement for nursing home care; they do not qualify based on age alone.] How much progress have we made? By March 31, 2013, the number had been reduced to 1,414,957 – an 18% reduction in the population of institutionalized disabled people. [See Chart One below for a State-by-State breakdown.] June 22, 2014 is the Fifteenth Anniversary of the Supreme Court’s Olmstead decision. In accordance with that decision and with the ADA’s “most integrated setting” requirement, people with disabilities should free from being unnecessarily isolated or at risk of unnecessary isolation in nursing homes. While there has been an 18% reduction in the nursing home population of people with disabilities nationwide, rates vary among the States. Hawaii had a 28% increase and Nevada had a 4% increase in nursing home population from 2000 to 2013; however, these were the only two states that increased their institutional populations. A few States had small reductions of less than by 5% (Georgia had only a 1% reduction and Maryland had only a 5% reduction, which was followed closely by Texas and New Jersey’s reductions at 7% and 9% respectively. On the positive side, Oregon was the most effective State at reducing its nursing home population with a reduction of 47%, second was Alaska at 36% and the following States all reduced these populations by at least 30% (Idaho, Maine, Minnesota, Oklahoma, Vermont, D.C., and Wisconsin). Kudos to those States. While we do not have current comparison data for average Nursing Home occupancy rates, we do have it for 2011, when the national average occupancy rate was 83%. One might think that a State that had low nursing home occupancy rates would also be reducing its Medicaid expenditures on nursing homes. After all, it seems that reduced numbers of persons with disabilities in the nursing homes and many unused/unoccupied nursing home beds should result in less total Medicaid funds going to keep people with disabilities unnecessarily isolated or at risk of such isolation. [See Chart Two below.] Are you surprised to learn that between 2000 and 2012 there was a 31% increase in the total amount of Medicaid funding for nursing home residents? There was a $12.4 billion increase in Medicaid funding for nursing homes during those years despite both an 18% reduction in number of residents and only an 83% occupancy rate. [See Charts Three and Four below.] Sometimes I know I am in the wrong business. What is amazing given these reductions and relatively low occupancy rates between 2000 and 2012 is that the national average of Medicaid nursing home expenditures actually increased by 31%! There was a total of $12.4 billion more Medicaid expenditures over that period. Here are the States that increased their Medicaid nursing home expenditures by more than 80%: Arizona, Arkansas, California, Idaho, Indiana, Maryland, Mississippi, Nevada, Utah, Virginia. Although Delaware, Michigan and D.C. had less than a 10% increase, there were a few States that acutally reduced the percentage of their nursing home expenditures, including Hawaii, Minnesota, New Mexico, Pennsylvania, and Tennessee. It is hard to believe that the community of disability advocates cannot make the cost savings argument to your State legislatures and your Governors. We can and must make arguments newspapers, TV, and social media outlets that will result in real outrage. We know that more than 90% of aged and younger people with disabilities do not want to be institutionalized and would prefer to reside in their own homes and communities. We also know that it is cost effective to provide these services in the community and that they have actually been provided for people exactly like those residing in nursing homes. This is a shame. So what’s happening? The nursing home industry is ripping off your State budgets. (In the next Information Bulletin, we’ll discuss what’s going on in those nursing homes.) Here are four State-by-State Charts: the first is the decrease in nursing home populations from 2000 – 2013, the second is the nursing home occupancy rates in 2011, the third is the % increase in nursing home Medicaid expenditures between 2000 and 2012, and the fourth is the actual Medicaid dollar increase in nursing home expenditures between 2000 and 2012. Chart One - % decrease in nursing home populations from 2000 – 2013. Alabama -1-13% Alaska -36% Arizona -8% Arkansas -16% California -12% Colorado -10% Connecticut -21% Delaware -10% Florida -14% Georgia -1% Hawaii 28% Idaho -30% Illinois -18% Indiana -18% Iowa -24% Kansas -26% Kentucky -20% Louisiana -18% Maine -31% Maryland -5% Massachusetts -23% Michigan -18% Minnesota -32% Mississippi -12% Missouri -21% Montana -26% Nebraska -24% Nevada 4% New Hampshire -25% New Jersey -9% New Mexico -12% New York -12% North Carolina -25% North Dakota -21% Ohio -15% Oklahoma -32% Oregon -47% Pennsylvania -28% Rhode Island -11% South Carolina -18% South Dakota -18% Tennessee -17% Texas -7% Utah -16% Vermont -31% Virginia -24% Washington -24% DC -30% West Virginia -17% Wisconsin -31% Wyoming -17% U.S. -1-18% Chart Two - nursing home occupancy rates in 2011 Alabama 85.40% Alaska 91.30% Arizona 70.40% Arkansas 72.80% California 84.90% Colorado 80.50% Connecticut 88.70% Delaware 86.10% Florida 87.60% Georgia 85.30% Hawaii 91.40% Idaho 69.80% Illinois 78.50% Indiana 78.50% Iowa 79.70% Kansas 82.70% Kentucky 89.60% Louisiana 72.50% Maine 91.00% Maryland 87.60% Massachusetts 88.30% Michigan 85.00% Minnesota 90.60% Mississippi 88.20% Missouri 71.80% Montana 69.50% Nebraska 78.30% Nevada 81.60% New Hampshire 89.70% New Jersey 87.90% New Mexico 82.70% New York 91.80% North Carolina 86.20% North Dakota 90.30% Ohio 85.30% Oklahoma 67.30% Oregon 61.40% Pennsylvania 90.40% Rhode Island 92.20% South Carolina 89.50% South Dakota 100.00% Tennessee 84.90% Texas 69.90% Utah 66.30% Vermont 87.60% Virginia 88.20% Washington 80.40% DC 93.40% West Virginia 88.10% Wisconsin 83.10% Wyoming 81.60% U.S. 83.0% Chart Three - % increase in nursing home Medicaid expenditures between 2000 and 2012 Alabama 39% Alaska 115% Arizona 3068% Arkansas 119% California 90% Colorado 71% Connecticut 28% Delaware 8% Florida 77% Georgia 61% Hawaii -99% Idaho 92% Illinois 12% Indiana 92% Iowa 15% Kansas 26% Kentucky 51% Louisiana 67% Maine 13% Maryland 82% Massachusetts 31% Michigan 7% Minnesota -4% Mississippi 97% Missouri 29% Montana 26% Nebraska -6% Nevada 123% New Hampshire 51% New Jersey 11% New Mexico -98% New York 10% North Carolina 47% North Dakota 13% Ohio 13% Oklahoma 60% Oregon 38% Pennsylvania -6% Rhode Island 31% South Carolina 54% South Dakota 31% Tennessee -7% Texas 67% Utah 85% Vermont 50% Virginia 68% Washington 1% DC 54% West Virginia 94% Wisconsin 13% Wyoming 108% U.S. 31% Chart Four - actual Medicaid dollar increase in nursing home expenditures between 2000 and 2012 Alabama $255,754,231 Alaska $69,148,946 Arizona $475,688,312 Arkansas $360,783,181 California $1,998,500,869 Colorado $257,127,331 Connecticut $272,916,597 Delaware $7,535,638 Florida $1,220,177,047 Georgia $462,313,596 Hawaii (-$147,584,084) Idaho $102,276,230 Illinois $187,080,589 Indiana $705,632,599 Iowa $73,325,212 Kansas $92,238,026 Kentucky $284,788,789 Louisiana $346,159,432 Maine $25,352,670 Maryland $509,910,527 Massachusetts $429,138,089 Michigan $116,400,288 Minnesota (-$32,379,189) Mississippi $373,034,866 Missouri $213,203,966 Montana $33,015,318 Nebraska (-$21,419,330) Nevada $105,515,937 New Hampshire $110,248,344 New Jersey $177,204,426 New Mexico (-$161,591,525) New York $620,173,358 North Carolina $390,328,061 North Dakota $22,665,290 Ohio $274,931,768 Oklahoma $185,939,465 Oregon $90,763,291 Pennsylvania (-$231,182,111) Rhode Island $75,641,677 South Carolina $195,064,443 South Dakota $31,717,171 Tennessee (-$72,734,458) Texas $959,781,368 Utah $80,111,282 Vermont $39,090,314 Virginia $332,358,019 Washington $4,179,217 DC $76,178,032 West Virginia $259,072,260 Wisconsin $113,425,426 Wyoming $52,403,886 U.S. $12,401,404,686 Special thanks to Truven Health Analytics and Kaiser Commission for background data. 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 10/2013 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.

Olmstead 15th Anniversary [Part One] - How Much Progress Has Your State Made? Information Bulletin # 390 (6/2014) On June 22, 1999, the Supreme Court held in Olmstead held that “unnecessary isolation is properly regarded as discrimination based on disability.” In this decision, the Court upheld the ADA’s regulation that “[a] public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” Happy Anniversary! What a 15 year ride it has been. We’re going to look State-by-State at how much progress has been made and where advocates might focus in the future. As you know from numerous previous Information Bulletins, the total Medicaid Long Term Services and Supports (LTSS) includes expenditures both in the institution and in the community. Since the largest institution for people with disabilities is the nursing home, we’ll focus in this Information Bulletin there. Fiscal Year 2000 started on July 1, 1999. In FY 2000, the national average for community-based Medicaid funded programs and services was 18.7% of the total LTSS. Therefore, the remaining 81.3% went to keep older and younger people with disabilities “unnecessarily institutionalized” in nursing homes. These FY 2000 expenditures are the Olmstead/ADA base for comparison. In FY 2000 dollars, only $9 billion Medicaid funding was spent to keep people in the community, while $49 billion was spent to institutionalize them in nursing homes! Quite a spread. By FY 2012 (the latest year for which we have reliable national data), the national average for community-based Medicaid funded programs increased to 38.8% of the total LTSS and the institutional expenditures decreased to 61.2%. In FY 2012, $22 billion in Medicaid funding was spent in the community (up from the $9 billion in FY 2000) but $74 billion was spent to keep people in “unnecessary isolation” (up from $49 billion in FY 2000). Let’s now compare States by focusing on the 38.8% increase in the national average of Medicaid funding for community-based programs in FY 2012. This comparison looks only at the percentage increase in funding going to community-based programs from 2000 to 2012. We believe that a State’s commitment to end discrimination against people with disabilities and to enforce the Olmstead decision and the ADA is reflected in its increase in community expenditures. Here’s a State-by-State comparison of community-based expenditures as a percentage of their entire LTSS from FY 2000 to FY 2012. Remember - to compute the percentage of Medicaid institutional expenditures, just subtract the %s displayed from 100. % of Total LTSS Medicaid Expenditures In The Community for People with Disabilities 2000 2012 Alabama 11.0% 5.2% Alaska 28.8% 62.4% Arizona 14.1% 42.0% Arkansas 30.0% 31.7% California 22.6% 57.1% Colorado 26.9% 45.5% Connecticut 16.9% 25.8% Delaware 13.1% 21.3% Florida 10.1% 23.0% Georgia 14.2% 29.0% Hawaii 14.2% n/a Idaho 26.0% 43.5% Illinois 8.5% 31.9% Indiana 7.9% 18.7% Iowa 11.1% 26.6% Kansas 26.6% 31.5% Kentucky 22.6% 14.4% Louisiana 5.7% 30.0% Maine 17.1% 32.3% Maryland 12.4% 23.4% Massachusetts 17.3% 44.7% Michigan 11.3% 23.6% Minnesota 21.8% 65.4% Mississippi 6.7% 22.2% Missouri 20.9% 37.4% Montana 24.9% 36.2% Nebraska 16.9% 23.6% Nevada 17.1% 33.5% New Hampshire 9.9% 18.8% New Jersey 10.0% 15.7% New Mexico 11.4% n/a New York 29.9% 45.9% North Carolina 34.6% 39.8% North Dakota 3.4% 14.0% Ohio 11.7% 32.4% Oklahoma 16.3% 30.8% Oregon 48.0% 60.7% Pennsylvania 3.2% 24.7% Rhode Island 7.5% 18.8% South Carolina 22.5% 26.2% South Dakota 6.2% 16.3% Tennessee 0.5% 31.3% Texas 28.5% 50.1% Utah 8.3% 21.9% Vermont 23.1% 44.7% Virginia 17.0% 43.9% Washington 39.4% 61.7% Dist. of Colum 11.4% 54.1% West Virginia 30.2% 31.3% Wisconsin 19.6% 47.9% Wyoming 9.0% 20.0% U.S. 18.7% 38.8% Disability advocates of aged and younger people, at this time of celebration, many of you should recognize that these increases are extremely important and represent your real efforts. These changes do not come about by magic but by hard grass roots organizing and efforts. These changes directly impact hundreds of thousands of people with disabilities. Some states have significantly turned the balance and to them we offer real congratulations; some have made some progress but still have a ways to go. Steve Gold, The Disability Odyssey continues Special thanks to Truven Health Analytics for data. Back issues of other Information Bulletins posted after 10/2013 can be found only at http://stevegoldada.blogspot.com/ Information Bulletins before 10/2013 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.

State by State Medical Assistance FY 2012 LTSS Data for Aged and Disabled. Information Bulletin #389 (May 2014) For the past eleven years, we have tracked Medicaid funds by State by comparing community versus institution expenditures for people with disabilities. The FY 2012 data is now available. This Information Bulletin will focus only on Older Adults and People with Physical Disabilities from both a six year (FY 2007-2012) perspective with a more detailed look at FY 2012. It was reported that “Federal Fiscal Year (FFY) 2012 marked the second consecutive year with little or no growth in national Medicaid spending for long-term services and supports (LTSS) [which includes both institutional and home and community-based services (HCBS)]… Average annual growth from FFY 2010 to FFY 2012 was 0.4 percent, compared to 6.2 percent from FFY 2000 to FFY 2010.” Some good news: the “total LTSS spent on home and community-based services (HCBS) increased from 48.7 percent in FFY 2011 to 49.5 percent in 2012. The shifting balance was attributable to both an increase in HCBS spending of 2.4 percent and a decrease in spending for institutional services of -2.3 percent.” However, this national average significantly “masks differences across population groups. HCBS accounted for 70 percent of spending in programs targeting people with developmental disabilities,” but only “39 percent of spending in programs targeting older people or people with physical disabilities.” That means for people with ID, only 30% of the entire MA LTSS went to institutionalize people, but for people with A/PD 61% went to nursing facilities. Yes, once again the ID advocates and ID community continues to spend a significantly higher percentage of their LTSS in the community and not institutions, as compared to the PD/A advocates. Focusing on the LTSS for people with physical disabilities, including aged people with disabilities [yes, the “aged” group is counted only if they have a disability that would qualify for nursing facility care], there is some encouraging data. 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 2012, it was 38.8% to 61.2%. 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 attack, the arc of history will continue to bend, but very, very slowly. We all know why this imbalance is so slow to change: the nursing home industry is very powerful and contributes a lot of money to Governors and State legislators, and they set your State budgets. 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 with an institutional bias. Unlike the for people with Developmental Disability, where 28 States spend more than 75% of their Medicaid expenditures in the community and only 3 States spend less than 50% in the community, for the Older Americans and People with Physical Disabilities no States spent more than 65% in the community and 48 spent less than 50% in the community. Quite a difference! Here are the States that spent the least in the community in FY 2012 for A/PD, and therefore spent the most in the nursing homes. The worst/least Medicaid expenditures in the community was North Dakota, followed by Kentucky, Alabama, New Jersey, South Dakota, Indiana, New Hampshire, Rhode Island – all spent less than 20% of their MA LTSS in the community for people with A/PD, and by definition therefore spent more than 80% in nursing homes. 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 five states spent more than 70% of the Medicaid funds in the community for people with DD, while spending less than 20% in the community for people with A/PD: New Hampshire, Alabama, Rhode Island, South Dakota and Kentucky. Quite a difference! Here are the States that spent the most in the community in FY 2012 for A/PD, and therefore spent the least in the nursing homes: Minnesota, Alaska, Washington, Oregon, California, District of Columbia, Texas and Wisconsin. These States are the winners – virtually the same as in 2011. What are advocates in these States doing right? Tell us. 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. 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.

A Victory! Information Bulletin # 388 (4/14) In the previous Information Bulletin, we pointed out that the disability community had been extremely dissed by the LBJ conference on Civil Rights. What follows is from the American-Statemen. There are lessons to be learned…… Texas disability rights groups launch voter effort, push for more clout By Andrea Ball - American-Statesman Staff When disability rights activists discovered they’d been left out of one of the highest-profile civil rights events in decades, the group came out swinging. The country’s 57 million people with disabilities — 3 million of them in Texas — deserved to be represented at the three-day Civil Rights Summit at the LBJ Presidential Library, advocates said. Two-thirds of them are unemployed. Accessible housing is in short supply. More than 100,000 Texans are on a waiting list for services to help them live independently. But people with disabilities have not been able to muster the kind of political clout claimed by other groups, such as the gay or women’s rights communities. That’s why the omission from the summit stung. “We are too infrequently a part of the conversation,” said Lex Frieden, one of the chief architects of the 1990 Americans With Disabilities Act. Summit organizers ultimately invited Frieden to speak on a panel about social justice. But disability rights supporters say the episode was a wake-up call to mobilize in bigger numbers and stop being an afterthought. Advocates have launched a voter registration and education effort. They’re inviting candidates for top political offices to speak at a September conference on disability issues. They’re planning events to celebrate the upcoming 25th anniversary of the Americans with Disabilities Act. “Disability rights are civil rights,” said Bob Kafka of the advocacy group ADAPT of Texas. “We thought it was a given. This whole thing highlighted that we still are late being invited to the party.” For decades, Texas advocates have been a strong force behind many reforms affecting Texans with disabilities. Supporters have pushed for millions of dollars in curb cuts for people with wheelchairs, helped secure wheelchair lifts on Austin buses, championed wage increases for professional caregivers and pushed for more community services that let people live independently. But that work has mostly happened outside the spotlight. Now and then, ADAPT, generally considered the most radical of Texas advocacy groups, makes headlines for its protests or mass turnout at meetings. ADAPT members have been arrested for protesting budget cuts at the Capitol, outside the Governor’s Mansion and in other public places. Kafka has been arrested dozens of times for such civil disobedience. “We think it’s so important, people are literally willing to go to jail for it,” he said. People who have disabilities vote at lower rates because of transportation problems, inaccessible polling places and other barriers. If it could get people to the polls, the disability community would be a powerful voting bloc, Kafka said. Together, organizations across the state — including nonprofits, schools and state agencies — work with hundreds of thousands of people. The Arc of Texas alone has a mailing list of 20,000 people. The Americans with Disabilities Act — which outlaws discrimination in areas such as public transportation, employment and access to public facilities — was a huge step in the battle for civil rights, Frieden said. Disability parking placards and wheelchair ramps have become the norm. The less visible obstacles are the ones members of the disability community say they continue to face. Although employers are required to make “reasonable accommodations” for people with disabilities — such as adaptable work spaces or computer technology for people with visual impairments — millions of employable Americans with disabilities remain out of work. That’s because they are often seen for “what they cannot do, when, in reality, there are many, many more things that they can do,” Frieden said. Advocates also say that professional caretakers are poorly paid, that a shortage of funding for community services unnecessarily forces people to live in nursing homes or institutions and that the dearth of accessible housing in the community limits where people can live. People with disabilities say these barriers infringe on their civil rights. That’s why they were so offended when they were not invited to the LBJ summit, said ADAPT organizer Cathy Cranston. “It was like, ‘Wait a minute, guys; what about us?’” she said. “It seems like, somehow, we’re always forgotten.” The Civil Rights Summit was a national event that drew President Barack Obama, three former presidents and national experts to discuss racial equality, immigration, gay marriage and other issues. Summit organizers had planned to feature civil rights issues in which Johnson had played a role, such as the Civil Rights Act of 1964. They also wanted to focus on issues that are still in the courts. When asked why disability rights was not on the agenda, LBJ Presidential Library Director Mark Updegrove told the media, “There is little lingering legislative debate about ADA — it is unquestionably the law of the land.” Disability rights advocates disputed that, citing ongoing lawsuits accusing states of violating the ADA. Supporters across the country launched a campaign to be included in the summit, writing and calling the LBJ library, the media and the offices of Obama and former Presidents Bill Clinton, Jimmy Carter and George W. Bush. Updegrove said one of the reasons he didn’t initially include disability rights in the program is the issue was already being addressed at a conference hosted by the George Bush Foundation scheduled for a few days before the LBJ summit — an event Updegrove himself planned to attend. When he went, he met Frieden, who explained that the community didn’t want its civil rights battle to be treated differently from the others. “I realized that I was wrong and asked Lex if he would be kind enough to participate,” Updegrove said. Advocates praised the decision. Mobilizing the vote This spring ADAPT of Texas is working on the Disability Voting Action Project, a statewide effort that uses the Internet and other advocacy groups to help register people to vote and find ways to get them to the polls. In June, ADAPT will send a survey to all of the candidates running for governor, lieutenant governor and attorney general. Those answers will be shared with the disability community. Multiple disability advocacy groups also plan to host a conference in September in which candidates for those same state offices will be invited to speak. It’s not a debate or a partisan event, Kafka said. It’s an effort to get the candidates on the record about what they plan to do to help people with disabilities, he said. “We hope they will be wise enough to come,” he said. Gubernatorial candidate and current Attorney General Greg Abbott, a Republican, has met several times with disability advocates since beginning his campaign, said Abbott spokesman Matt Hirsch. “Greg Abbott is running an inclusive campaign and will continue to reach out and directly engage with all voters across Texas,” Hirsch said. The Democratic candidate for governor, state Sen. Wendy Davis, did not respond to a request for comment. No matter who wins the upcoming elections, advocates say they’ll continue to emphasize that disability rights are civil rights and that their community deserves to be heard. “When you include us, we’ll blow your mind,” said Joe Tate of the advocacy group Community Now. “We do have insight that’s important.” ****** 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 10/2013 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.

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.