The Disability Community and Medicaid Expansion: What’s At Stake. Information Bulletin #369 (1/2013). In 2010 Congress enacted the Affordable Care Act. One part of this legislation mandated that all States expand their Medicaid to all persons whose incomes are under 138% of the federal poverty level, which is less than $15,415 per year for a single person and less than $31,809 for a family of four. In June 2012, the U.S. Supreme Court held that Medicaid Expansion could not be a mandate, making Medicaid Expansion optional for States. This Fact Sheet explains why Medicaid Expansion is vitally important to people with disabilities. Based on data from the 2010 American Community Survey for people under 65 years old, 13.7% of non-elderly community residents with family incomes under 138% FPL have disabilities, compared to 6.7% of those with incomes above that level. So the disability rate among poor or near-poor Americans is more than twice that of those with higher incomes. For people with disabilities on SSI, they already receive Medicaid. Also, in many States that provide Medicaid Waivers for community-based services for people with disabilities, the income eligibility levels are above SSI. However, there are a LOT of people with disabilities in every State who are neither on SSI nor on a Waiver and who do not have any health coverage for basic health care – doctors, prescriptions, and hospitalizations. These are the people with disabilities for whom Medicaid Expansion is critical! What follows are the number of people by State who are at 138% of the federal poverty level and under, who are not currently receiving Medicaid, either based on SSI or Waiver, and are under 65 years. While a majority of States are opting into the Medicaid Expansion, a number have not yet decided it is in their economic interest or the interest of people with disabilities. [We also have separate Fact Sheet for the recalcitrant States. It makes an economic development argument why the States should participate. If you want it for your State, just email me with the name of your State.] Disability Advocates - here are the number of people with disabilities who will benefit if your State Expands Medicaid eligibility! # People with Disabilities under 138% FPL, under 65, and not currently on Medicaid Alabama 77685 Alaska 6550 Arizona 37366 Arkansas 44130 California 227747 Colorado 35162 Connecticut 16640 Delaware 5269 District of Columbia 3774 Florida 190073 Georgia 105420 Hawaii 5623 Idaho 16118 Illinois 80884 Indiana 67339 Iowa 19183 Kansas 24259 Kentucky 76619 Louisiana 67078 Maine 12465 Maryland 31616 Massachusetts 19008 Michigan 109828 Minnesota 24521 Mississippi 51235 Missouri 67885 Montana 10475 Nebraska 13643 Nevada 21158 New Hampshire 10237 New Jersey 41611 New Mexico 20393 New York 102793 North Carolina 105627 North Dakota 3453 Ohio 121348 Oklahoma 49336 Oregon 49213 Pennslyvania 108012 Rhode Island 10213 South Carolina 60840 South Dakota 5878 Tennessee 80742 Texas 237253 Utah 12641 Vermont 3383 Virginia 59705 Washington 49436 West Virginia 34953 Wisconsin 31285 Wyoming 4197 0 U.S. 2665407 Steve Gold, The Disability Odyssey continues Thanks to Steve Kaye, UCSF 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.

Nursing Home Residents and My Medicaid Matters. Information Bulletin #368 (1/2013) Over the next year, States may try to reduce community-based Medicaid-funded services for both disabled and elderly people. When they do, advocates should instead force them to focus money going to the institutional Medicaid-funded services, i.e., nursing homes, the flip side to the community. Nursing homes, unlike the community, continue to receive increased Medicaid reimbursements. People who have “self-care” needs, i.e., who need assistance with activities of daily living, trigger both an ADA/Olmstead and a fiscal issue, depending on where they receive these Medicaid services – in the community or in an institution. Based on data collected and analyzed by Steve Kaye, Director, PAS Center, UCSF, advocates can use the following points in your State’s My Medicaid Matters struggle to show how to reduce institutional expenses. The point of the data is to enable advocates to ask why your State has so many non-elderly and non-cognitively impaired persons unnecessarily institutionalized. What follows are ratios of two specific subcategories of nursing home residents (1. non-elderly and 2. non-cognitively impaired) to the total state population with self-care difficulties in 2010. First, nationally, there was an average of 6.3 non-elderly nursing home residents per 100 non-elderly people with self-care difficulties. The ten worst States with much higher rates than 6.3 national average are ranked as follows: Illinois (#1 with 14.5 non-elderly N.H. residents), Connecticut (#2 with 12.2), North Dakota (#3 with 11.7), District of Columbia (#4 with 11.3), South Dakota (#5, 10.1), and then Ohio, Iowa, New York, Hawaii, and Missouri. Why do some States have twice the national average of non-elderly persons with disabilities institutionalized? With appropriate scope and quantity of community-based services, many of these non-elderly people could and would want to live in the community. Many States have addressed this and significantly reduced non-elderly persons in nursing homes – e.g., New Mexico has 2.8 non-elderly NH residents per 100 total NH residents, less than 25% of the worst State. The number of non-elderly persons in NH is a matter of State policy. What is your State doing to reduce this institutionalized population? Rather than reduce community-based services, reduce much more expensive NH residents and provide services in the community. Second, nationally, there was an average 7.5 nursing home residents (all ages) without cognitive impairments per 100 with self-care difficulties. The ten worst States with high rates well-higher than the national average are ranked as follows: North Dakota (#1 with 23.4 N.H. residents), Iowa (#2 with 17.0), South Dakota (#3 with 16.4), Connecticut (#4 with 16.2), Rhode Island (#5, 15.3) and then Nebraska, Kansas, Wyoming, Indiana, and Minnesota. States have addressed this and many have reduced this institutionalized population including, e.g., Oregon with only 3.1 non-cognitively impaired NH residents per 100 population with self-care difficulties, less than 13% of the worse State. Others include Alaska (2.3) and Arizona (4.3). Here’s another unnecessarily institutionalized group who should be addressed before community-based reductions are implemented. Third, States which have “rapidly rebalanced” their state Long-Term Care Medicaid expenditures, i.e., shifted more than 10% of their Medicaid funds from institutional care to community-based care, have reduced the total number of long-stay nursing residents by 9% between 2002 and 2010. In States that have not rapidly rebalanced their LTC budgets, there has been an increase in nursing home residents. Advocates must know what’s happening on the institutional side of the ledger. Look at the institutional expenditures over the past eight years. Has the N.H. per diem increased? Compare it to the community-based services. Are there people in N.H. who could be more inexpensively served in the community? Has the total N.H. population increased or decreased? The NH industry is a powerful player, but we have the data and the way to save money. If your State is threatening to reduce community-based Medicaid Long-Term Care services, use these three items to argue why such reductions are wrong. 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.

Medicaid Expansion, Disproportionate Share Hospital Payments, and a Train Wreck Waiting to Happen. Information Bulletin #367 (12/12). The Affordable Care Act has many pieces. Some of the pieces are interdependent. This Information Bulletin deals with two of those pieces to explain their interdependence and why it is important to you. When Congress enacted the Affordable Care Act in 2010, one provision (Medicaid Expansion) required Medicaid be provided to people who had not been previously eligible and whose incomes were under 133% of the federal poverty level, about $14,856 for a single person and $30,657 for a family of four. This mandatory Medicaid Expansion would have impacted approximately 21.3 million low-income people nationwide, beginning in January 2014. Another provision of the Affordable Care Act significantly reduced what was known as Medicaid payments to “Disproportionate Share Hospitals” (DSH). These were federal Medicaid reimbursements made annually to States for those hospitals that provided a significant amount of health care and service to many persons whose incomes had placed them above Medicaid, but who did not have private health insurance. At least 51% of these payments will be eliminated under the ACA by 2019. Medicaid DSH payments pretty much covered the same 21.3 million people Medicaid Expansion was intended to have covered. In 2010, when Congress enacted the ACA, Medicaid Expansion would have been mandatory on the States. The States would have had to provide Medicaid to the 21.3 million people. In return, the federal government would have paid 100% coverage of the costs of the 21.3 million for the first three year years and about 90% for the next three years. Mandatory Medicaid Expansion has virtually no incremental cost to the States. It has been estimated that between 2013 and 2012the federal share of the expansion to all States would be $800 billion and the States’ share $8 billion. Here’s how the DSH and the mandatory Medicaid Expansion were intended to be interdependent. With the enactment of the ACA, these 21.3 million people would have become Medicaid recipients and would have received services and care from the hospitals, which would then not need to have been reimbursed with DSH payments. As regular Medicaid recipients, no DSH reimbursement would have been necessary because States and then hospitals would have received direct Medicaid hospital reimbursement for these 21.3 million people. Then came the 2012 U.S. Supreme Court decision that held that Congress could not require States to implement Medicaid Expansion (even though it would cost the States virtually no State funds). What the Court did not deal with was that ACA had virtually eliminated DSH payments. Lo and behold – your hospitals can get royally shafted if your State does not opt to participate in the Medicaid Expansion. How? The States and then the hospitals will not receive either the DSH payments for these 21.3 million people that they had received prior to the ACA. If a State does not opt for Medicaid Expansion, these same 21.3 million people will still go to hospitals that must treat them, but the hospitals will not receive Medicaid reimbursement. Neither Medicaid nor DSH payments. For the hospitals and therefore for States that do not provide Medicaid Expansion, this is a train wreck waiting to happen. What’s the answer? States must provide for Medicaid Expansion so that hospitals can receive Medicaid reimbursements for care and services they provide to these 21.3 million people. Unfortunately, many States appear to be considering not voluntarily participating in Medicaid Expansion. We cannot believe that those States have factored in the DSH losses to their hospitals. From purely a financial viewpoint, States will significantly benefit if they expand Medicaid and ensure hospitals receive Medicaid reimbursement for the care and services they provide to the 21.3 million people. Disability and Elderly Advocates: 1. Get to your statewide Hospital Associations. They have paid lobbies that know how to work the political process. Join their efforts to convince your Governors and State legislators to enact Medicaid Expansion. Timing is critical since State budgets are being planned NOW for 2014. 2. Most newspapers, etc. do NOT understand how the ACA’s Medicaid Expansion fits together with the DSH payments. Explain it to them. Governors in the following States have threatened not to expand Medicaid in 2014. We are not sure how much is just huffing and puffing. Here are the approximate annual DSH Medicaid funds their States have received and potentially will lose, if Medicaid Expansion does NOT occur in these States. ANNUAL MEDICAID DSH PAYMENTS TO (SELECTED) STATES: Alabama $445,819,332 Arkansas $61,416,819 Connecticut $162,627,439 Florida $241,187,904 Indiana $121,122,632 Kansas $46,807,379 Kentucky $173,659,743 Louisiana $770,957,650 Michigan $338,776,418 Mississippi $204,084,644 Missouri $525,857,264 Nebraska $47,698,173 Nevada $95,232,395 New Jersey $975,416,270 New Mexico $28,851,260 Oklahoma $40,706,148 Ohio $566,951,426 Pennsylvania $534,244,593 Rhode Island $122,720,991 New Jersey $930,234,696 South Carolina $415,604,650 Tennessee $151,396,268 Texas $1,286,627,916 Utah $25,914,531 Virginia $192,435,368 West Virginia $55,087,700 Nationwide $15,019,365,273 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.

SSI, People With Disabilities, and Reaching the Federal Poverty Level. Information Bulletin #366 (11/2012). Supplemental Security Income (SSI) is basically a federal program for people who are disabled (and older Americans). As of 2011, there were about 6.7 million people with disabilities who received SSI (another 1 million recipients were over 65). These people are the poorest of all the disabled people in the country. Most of them do not qualify for either Social Security or Medicare; some receive both SSI and Social Security, but combined only to the SSI level. Throughout the recent election campaign and well before that, there has been virtually no discussion, mention or let alone a moral outrage addressing a basic minimal, basic, livable support for people who struggle to survive on SSI. The current monthly federal SSI grant is $698 a month ($8,376 annually) for a single person and for a couple it’s $1,086 a month ($13,032 annually). SSI eligibility automatically triggers Medicaid eligibility. States have the option to provide a State Supplement to the federal SSI grant. Of the 6.7 million people with disabilities who somehow survive on SSI, only 1.6 million, who live in the community, receive a State Supplement. By and large, most States supplement SSI for persons who reside in personal care homes, Medicaid facilities, nursing homes, and other institutions – but not for people with disabilities who live independently in the community. The amount of institutional SSI State supplement is much higher than the SSI State supplement to live independently in the community. Hmmm. Sounds like another institutional bias, contrary to ADA’s “the most integrated setting” a la Olmstead. Let’s put the monthly federal SSI sums in some perspective. The federal poverty level is $10,890 for a single person and $14,710 for a couple, compared to the SSI federal $8,376 and $13,032 respectively. As inadequate as the federal poverty level is, it should be the bottom benchmark! For people with disabilities who must survive on SSI, they live on 75% of the federal poverty level for a single person and 83% of the FPL for a couple. This gap has been approximately the same for the last ten years. For those persons who reside in the community on SSI, to reach just the federal poverty level, the federal SSI grant (or a State supplement) would have to increase by $209 a month for a single person and $140 for a couple. Other than Alaska, no State provides that amount of a State Supplement for single persons with a disability who reside independently in the community. Only five States provide more than $140 a month for a couple. We all know how extremely difficult it is for a SSI recipient who is disabled to find a place to live that they can afford. The “2010 Priced Out” Report clearly demonstrated how the housing market overwhelmingly trumps the SSI grant. What advocates could do: 1. This is a federal issue. We do not believe any States will voluntarily increase their SSI State Supplements so people could afford to live healthy and safe lives independently in the community. 2. We need to make this a moral issue! It’s an outrage that the poorest disabled and elderly Americans are totally ignored and forgotten. 3. SSI cuts across all disability categories and the elderly. Therefore, increasing SSI is a great unifying and organizing issue. 4. Increasing the federal SSI amount even to the extremely inadequate federal poverty level is an economic stimulus on both a federal and State levels. People on SSI spend their entire grants just to survive, putting their entire grants into the economy. These are federal allocations well spent! 5. Where is the White House on this issue? Call the White House Domestic Policy, (202) 456-5594, and let them know. 6. Where are your U.S. Senators and House of Representatives who claim to represent and care about persons with disabilities and the elderly? Call them. 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.

Disabled and Elderly People in China. Information Bulletin #365 (11/2012) People with disabilities and elderly folks in China face many of the same issues we face in the U.S. What follows are some observations my wife and I have and what we learned during a recent trip to China. Obviously, what follows is limited to our observations and meetings with disability advocates. Background data: Out of the 1.3 billion people, approximately 85 million are people with disabilities and 190 million are people aged 60 or older. There are about 33 million elderly with various disabilities. China also ranks disabilities I – V, e..g., blindness in one eye ranked a # II but blindness in both eyes ranks as a # I. 1.Shanghai and Beijing each have about 3 percent of their elderly population (not clear about people with disabilities) who are in nursing facilities. In the past, elderly lived with their children as part of “filial piety.” Due to adult children’s pressure of work, their living costs, crowded housing, and geographically restricted medical insurance, such piety is quickly fading. There is no national health care and the available/affordable care depends on what Provence, like U.S. States, one lives in and one’s ability to pay for health insurance, Despite a poll that said “only” 5.5 percent of the respondents wanted to send their parents to a nursing home, there are no other options. When asked what if their parents do not want to go into a nursing home, one person responded that “we talk to our parents and they understand they have to go into one.” People with disabilities and the elderly are virtually forced into nursing homes. So much for choice. 2. China has only 300,000 caregivers, and one report indicated that most of them were unqualified. The same report estimated that about 11 million caregivers were needed So much for community-based services instead of institutional care. 3. China has a very medicalized view and definitions of disability. 4. Despite a marked increase in Provincial medical insurance coverage for the elderly in the past decade, one professor said that the “government should work out policies to guarantee adequate care for the elderly, which is an essential part of stable development. Government should increase the input and add the insurance for healthcare and rehabilitation, which will be much needed among the elderly but not covered by the current insurance system.” So much for a safety net. 5. China used the occasion of the 2008 Olympics to build curb cuts and install a number of accessible public bathrooms. During our recent visit, virtually every accessible bathroom in every city we visited was being used for storage and unusable by both disabled and nondisabled people. 6. Only in Beijing did we see a number of people with disabilities. In most other cities, we saw quite a number of disabled people who were begging in front of tourist attractions. One guide thought they were “professional beggars who maim themselves,” despite their obvious genetic impairments. The absence of people with disabilities in public places in other cities was really stark. 7. The value of people with disabilities was reflected in a conversation that people with disabilities should work. When asked what should be done if they could not work, given their impairments and how they would live, the response was that “with 1.3 billion people, their lives were not valuable and some people [i.e., people with disabilities] will not be missed.” 8. China does not have a viable, active disability or elderly advocacy network. The China Disabled Persons’ Federation is a government appointed and controlled entity which appears to reflect the central government’s positions. We were not surprised that the disability issues and problems were similar to many we face here. Disabled people of the world unite, you have nothing to lose…. 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 are 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.

15 States Do Not Need Housing Vouchers for Disabled Persons to Leave Institutions. Information Bulletin #364 (8/2012). States had to file an application with HUD to be eligible to receive some of the FY 2012 Section 811 Project-based Rental Assistance Demonstration Grants, aka the Melville vouchers. The good news is that 35 States (and D.C.) applied and will compete to receive these vouchers. Congratulations to disability advocates who worked with your State agencies to develop and submit these applications. What is amazing is that 15 States did NOT apply. While we recognize that many of the 35 States that did apply may not win the competition, these 35 at least got into the race. What about the 15 States that did NOT apply? These 15 States obviously have an abundance of housing vouchers, just sitting around in some drawer, so that anyone who wishes to leave an institution will receive a voucher and not have housing as a barrier to living in the community. Right? These 15 States do not claim that their Money Follows the Person is hampered by housing, do they? Are we correct? Can disability advocates in the 15 States just telephone their State Housing Finance agency and/or Medicaid agency and pick up a housing voucher that is not being used? What are we missing? Why did these 15 States not compete? Here are the 15: Alabama Arizona Arkansas Hawaii Idaho Iowa Kansas Kentucky Nebraska New Mexico Oklahoma South Carolina Tennessee Virginia Wyoming 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. As of August, 2010, 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.

ADA’s Olmstead “Most Integrated Setting” Mandate Will Be Undercut. Information Bulletin #363 (8/2012). Christine Gregoire, the Democratic Governor of Washington State, is deciding if she will threaten and undercut the right of people with disabilities to live in the community by eviscerating the Olmstead decision and the ADA’s “most integrated setting” mandate. How? In response to cuts to personal care services for approximately 45,000 Medicaid recipients, disability advocates sued the State of Washington. Democratic Governor Christine Gregoire argued in court that individuals with disabilities must be already institutionalized in order to be protected under the Olmstead decision. The Circuit court disagreed with Governor Gregoire. Now, Governor Gregoire is considering an appeal to the U.S. Supreme Court! She is putting the rights of people with disabilities at significant risk. If she takes the case to the Supreme Court, this Supreme Court will take the opportunity to turn back the clock on our rights. If appealed, “M.R. v. Dreyfus,” the name of the case, it will give the very activist U.S. Supreme Court an opportunity to substantially erode or completely eliminate Olmstead. The disability community in Washington State has urged Governor Gregoire to settle this case without going to the Supreme Court, but she has been unwilling to do so Disability Advocates must TAKE ACTION NOW to contact key people within the Gregoire administration and the national leaders in the Democratic Party to urge Governor Gregoire to settle this case and not take it to the Supreme Court. Our message: “Governor Gregoire should support the right of people with disabilities living in the most integrated setting in the community! Settle M.R. v. Dreyfus! No appeal to the U.S. Supreme Court.” The Olmstead decision is one of the few effective advocacy tools that the disability community has to fight against state budget cuts to home and community-based services that would force people with disabilities into unwanted and unwarranted institutionalization. TAKE THE FOLLOWING ACTIONS NOW. TIMING IS CRITICAL PLEASE DO IT TODAY: Please send emails, telephone and/or twitter to: 1. Marty Loesch, Chief of Staff for Governor Chris Gregoire, (360) 902-0499. Marty.loesch@gov.wa.gov 2. Kareem Dale, White House, Kareem_A._Dale@who.eop.gov 3. Telephone the White House’s Monthly Disability call • Date of Call: Friday, August 24, 2012 • Start Time: 2:00 p.m. EDT (dial in 5 minutes early) • Dial in: (800) 762-7308 • Code: White House Disability Call Valarie Jarrett will be on this call, and she is President Obama’s point person. Tell her what you think. 4. Telephone the Democratic Governors’ Assn. at 202-772-5600 or email them at http://democraticgovernors.org/contact/ 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. As of August, 2010, 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.