DRAC News & Current Events

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DRAC and UTA--We Forget Which Round

UTA has done it again, levying a fuel surcharge on those who can least afford it--Flextrans riders, persons who are using the disability discount and other individuals who are low income and dependent on UTA for their transportation services. Many of DRAC's members, who are on fixed incomes and others in similar circumstances will once again be forced between making decisions about eating a meal, making a needed trip to the doctor or purchasing the critical medication the doctor has prescribed. These are decisions no one in a society such as ours should ever have to make. Our society has rightly decided that low income individuals will receive subsidies or help with their most basic needs--food in the form of WIC, food stamps and food pantries, housing in the form of public housing and section 8 vouchers, and medical treatment in the form of Medicaid, CHIP and the PCN--Primary Care Network. All basic, services that is, except transportation, which is as critical as any other. Without transportation you don't get to the doctor or the pharmacy, you don't get to the grocery store and you don't get to government offices to sign up for other needed services.

UTA held a sham public hearing which really appeared to be a forum for John Inglish to make his case, but we were told we would have to make our case in written comments or to a court reporter, but that there would be no "public mike". We walked out in protest from that hearing. At the board meeting where this increase was voted on we made the plea again that they not vote on a surcharge without making plans to meet the needs of low income riders. UTA has had a weak facade of an effort to help Utah's low income who have Horizon cards with non-food stamp money. However, this is clearly inadequate to help Utah's many low income riders. The UTA board essentially acknowledged this as they supported their fuel surcharge, but claimed helping Utah's low income transit-dependent riders was the responsibility of  the legislature.

DRAC continues to call on UTA and the legislature to adequately address this issue. Below are our reasons for finding current efforts, such as they may be, for helping Utah's low income riders woefully inadequate. Also included below are our recommendations to UTA and the legislature. Feel free to come up with your own recommendations, but call you legislatures. Let them know that the UTA board has laid this problem at their feet and ask what they are going to do about it. Find ways to keep this in the public consciousness, and if you know who is representing your city or county on the UTA board and therefore presumably you, ask them what they are thinking when the ignore the needs of Utahs' low and fixed income riders.

1)      1)  UTA has not advertised, marketed or encouraged this program among Horizon Card recipients. We are in the process of attempting to get more information in this regard from UTA and honestly don’t know what records they have kept in this regard, but we don’t believe that all those who are eligible for the discount have been informed of this fact or have been encouraged to take advantage of it. We will communicate further with the committee as more information from UTA becomes available in this regard.

2)      2) Only 60% of Utah’s eligible low-income citizens receive a Horizon card. Despite efforts to simplify the application process, it remains a difficult, time consuming and for many, and overwhelming process, particularly when compared to the benefits. For example, an individual with a disability, who has the maximum income allowed under the federal poverty guidelines, but who nevertheless qualifies as living at the poverty level, with a standard deduction for utilities and a $400 a month housing cost will only receive $10 a month in food stamps. Likewise, Senior citizens receive a discount that is lower than the 16% Horizon card holder discount. If a Senior citizen lives at the poverty level and is struggling with their current transit costs they will not be helped by the Horizon card discount because senior citizens are also not being held harmless from the fuel surcharge.

3)      3) Only a relatively few actual Horizon cardholders can access the discount—Crossroads Urban Center has estimated that 10% or less. UTA has set up the discounted passes so they must be purchased by the Horizon card through non-food stamp funds that may be placed there by a job counselor. Thus qualifying for a Horizon card is not sufficient to be held harmless from the fuel surcharges. 

4)      4) The hold harmless clause for the fuel surcharge isn’t broad enough. Eco and University of Utah pass holders have been held harmless, as have the few who hold Horizon Cards. However, traditionally UTA has rightly recognized that persons with disabilities often live at or below the federal poverty level and live on fixed incomes. Accordingly, UTA has granted a discount to persons with disabilities that exceeds that of the discount granted to Horizon Card holders. Inexplicably, the fuel surcharge is being added to the discount afforded persons with disabilities, including flex trans users, who are truly transit dependent. We strongly believe that persons with disabilities should also have their discount held harmless from the fuel surcharge.

5)      5) Many state and federal assistance programs have recognized that exceeding the food stamp eligibility level doesn’t mean that income is so low as to render life a struggle. For example, a family of four that would qualify for the CHIP program wouldn’t qualify for a Horizon card.   Likewise, a family of four at the upper limits of eligibility for the WIC program wouldn’t qualify for food stamps. Thus, it is clear that by offering a discount only to Horizon card holders many of Utah’s truly need, low-income, transit dependent riders are not receiving desperately needed transit assistance. In fact, just the opposite. When Eco pass holders are considered, those who can least afford the fuel surcharge are being asked to shoulder an inequitable portion of the burden. 

Accordingly, the Disabled Rights Action Committee makes the following recommendations:

1)      1) Hold individuals with disabilities and senior citizens who qualify for discounts harmless from the fuel surcharge, particularly if they can demonstrate that they are low income.

2)     2)  Broaden the definition of low-income to include those who are eligible for other federal low-income programs. We have mentioned just two here—CHIP and WIC. To this we would add housing assistance, Medicaid and general assistance grants. Since it would be cumbersome for UTA to do its own eligibility determination, anyone who can present evidence of receiving any of these benefits, including the Horizon card should qualify for a UTA low-income discount and should likewise be held harmless from an onerous fuel surcharge. This would not only assist individuals who are genuinely low-income, but who don’t qualify for Horizon cards, but would likely pick up those individuals who qualify for Horizon cards, but who have not applied.

3)      3) Implied in the above recommendation is the concept that UTA should make obtaining a low-income discount as easy as possible. Any individual should be able to purchase a discounted pass wherever they are sold by simply presenting documentation that they are participating in one of these government low-income programs. Since not all individuals will be able to afford a monthly pass they should be able to bring their documentation in to a UTA office and have ID issued that would allow them to pay single discounted fares.

4)      4) Better promote any low-income discount, however it is designed, defined or applied. UTA should air public service announcements.  Flyers should be provided to agencies who serve low-income individuals. UTA should place notices of available discounts on buses, light rail and Frontrunner, as well as wherever bus passes are sold.

5)      5) Appoint new members to the UTA board who understand and who are committed to fighting for the rights of low-income riders. The legislature has an immediate opportunity to do so under legislation that was sponsored in this past session by Senator Killpack. We believe that the business community and local governments are currently well represented on the UTA board and that further advocacy for business interest isn’t needed. We accordingly urge President Valentine to appoint Senator Karen Mayne to the UTA board and Speaker Curtis to appoint Representative Steven R. Mascaro to the UTA board. Over time, these outstanding legislators have proven their understanding of our needs and their willingness to fight on our behalf. They will not allow themselves to be co-opted by UTA’s frequent specious arguments.

6)      6) Research the possibility of setting up a fund that businesses, individuals and organizations could donate to that in turn could help subsidize transit costs for low-income Utahns. This could also eventually be a donation check-off item on tax returns, as this is clearly a critical basic need that has long been neglected.

Another Great ADAPT Action in DC

All ADAPT Actions are high energy, exciting affairs and generally have more than their shares of big wins. They are always times of great camaraderie with old friends and comrades. The feeling is one of a cross between the sentimentality of an extended family reunion and the adrenaline rush of a major battle fought for a good cause. Still, this action, which included a 25th anniversary (yes, ADAPT has been fighting its various battles for 25 years) celebration.

We kicked off the action on Sunday with various orientation and planning meetings, along with a much needed fun walk-run and roll--much needed because of the funds it raises. It is also a nice way to "ease" into the action after what is sometimes a very long flight.

Monday, day 2 things started in earnest as we blocked access and egress to the CMS (Centers for Medicaid and Medicare Services). It didn't take much to figure out who was the target of this action and why, as wanted posters for our old friend Mike Leavitt were everywhere. Mr. Leavitt has issued rules that were originally ordered by congress to correct certain dubious practices by some states, but which have clearly exceeded the congressional intent to the point where governors on both sides of the political aisle have been screaming foul. Of particular concern for us is one rule which reduces funding for case management services that support individuals in moving out of nursing homes. Funding has been available for six months. It takes all of six month to apply for social security cards, birth certificates, community benefits such as food stamps, energy assistance and housing, hire attendants, locate accessible housing, locate community physicians, etc. etc. etc. Accordingly, we were completely baffled when the new CMS rules cut these case management services back to 60 days! It is impossible to make all the needed arrangements to get someone out of a nursing home in 60 days. This completely belies their assertion that they support efforts to move individuals out of institutional settings.

To their credit, CMS did their best to barricade themselves in, using a cubical divider several old chairs and whatever they could find. Only a few of our advance guard made it in. In one of the more exciting moments, an ADAPT member attempted to push against the cubical divider and was arrested and charged with destruction of federal property. We are happy to report that this preposterous charge was dropped. Otherwise, the action was relatively uneventful, except for the pouring rain and a truckers caravan that ringed DC with blaring horns to let Washington know of their displeasure with high fuel prices and of course, to show solidarity with us. Speaking of the rain, we would like to make special note of Frank Wulle, who held his post for several hours blockading the parking lot with no cover from the elements. It was no doubt the fact that many of those working in and visiting CMS couldn't get their cars out that ultimately led to CMS agreeing to meet with our leadership to further here and negotiate our complaints.  Accordingly, day one ended on a peaceful and successful note.

On day three, we converged on the offices of the National Governor's Association to hold a press conference in which we announced the ten best and the ten worst states in terms of their efforts to insure alternatives to institutional incarceration of persons with disabilities, along with several honorable and "dishonorable" mentions. No, Utah wasn't on either list. However, we keep pushing for her to get to the top, but so far making the ten best just doesn't seem to be a priority for our state. The press conference was a resounding success, in that the press was out in force.

Shortly after, a small contingent of our forces took over Senator John McCain's offices, while the remainder of our forces blocked off all access to the Republican National Headquarters. The Democratic National Committee has endorsed the Community Choice Act that we are fighting for. For those of you who have are new to our cause, this would allow funding for community support that is now reserved for nursing homes to be made available to all persons who become eligible for Medicaid funding of nursing home services. Currently, individuals who qualify for nursing home "care" are entitled to move into the nursing home immediately. However, if they opt for community support funding, even if the request is considerably cheaper than nursing home incarceration, they may be forced to wait years for such funding. Many have died waiting for community funding rather than move into the nursing home. In addition to the endorsement of the Democratic National Committee, both Democratic presidential candidates--Senators Obama and Clinton--have both co-sponsored the Community Choices Act.

However, no endorsement has been forthcoming from either the Republican National Committee (RNC) or their candidate for the presidency, Senator John McCain. Several of our smaller contingent who were in Senator McCain's hallway and office were arrested, including our own Barbara Toomer. However, the Democratic National Committee picked up on our protest and began making it into political fodder. They posted our protest on their web site and noted the way Senator McCain and the RNC treated persons with disabilities who want out of nursing homes. Accordingly, it is the opinion of this writer that the Republicans didn't want any further bad press of arresting persons with disabilities who were protesting for their rights to stay out of nursing homes. Accordingly, the siege of the RNC and of the remainder of our forces in Senator McCain's office turned into an unusually long standoff--from about 2 PM to 9 PM. Finally, the police warned that everyone who didn't leave voluntarily would be "removed." This is an unusual choice of words--the term generally used is "arrested." However, true to their word, they forcibly removed everyone was blocking a door and replaced our forces with their own. Lest anyone forget, forcibly removing a nonviolent group consists of putting power chairs into neutral and wheeling them off, unlocking the wheels of manual chairs and doing likewise and picking up the limp bodies of those who have walked to the action and carrying them off.

After some time of facing the police, who now barricaded the RNC and figuring that this standoff wasn't going anywhere, and that we had done what we could to call attention to the need for the RNC and Senator McCain to support the CMA, we disbanded and headed back to the hotel.

Day 4 ADAPT Utah did our traditional peaceable lobbying by dropping in on Utah's congressional delegation. To date, only Rob Bishop has signed on as a co-sponsor. Please write or call Representative Bishop and thank him for his support of this critical issue. Please call or write the rest of our delegation, especially Representative Matheson, who co-sponsored CMA when it was MiCASSA and who promised to co-sponsor CMA, but to date, several months after his promise, hasn't done so.

That evening, we began our celebration of ADAPT's coming of age. After all, this was our 25th year of action and successes. Our main meeting room was turned into a museum with incredible pictures and first-hand accounts of all actions--our own Barbara Toomer authored the first person account of ADAPT's very first action against the Denver transit system. We were reminded that ADAPT has not just come of age by surviving, but by growing and thriving. Thus, for the first time corporate sponsors came to the fore and that evening we were treated to a showing of an old TV move "When You Remember Me", the story of Wade Blank and Mike Mills, a young man in a nursing home "youth wing". Wade recruited young men to this wing and reformed its repressive nature, but when he got the idea of moving the "residents" to their own apartments and supporting them there, the nursing home fired Wade. Wade ultimately emptied the wing and started Atlantis, a Denver Based self sustaining community of persons with disabilities who moved out of this nursing home. Wade and these individuals turned activists for their civil rights and went on to form ADAPT. For the official story of ADAPT's beginnings with Wade Blank, click on ADAPT's "Little Guy" logo→

Day 5   We continued celebrated ADAPT's coming of age. The Wednesday night movie, complete with popcorn, drinks and candy, was sponsored by a managed care health insurance company who supports ADAPT's efforts. On Day five we were visited by the ADA Freedom bus and treated to a barbeque dinner, sponsored again by the insurance company and our hotel. Our action actually garnered several corporate sponsors, again evidence of our growing clout and numbers. Finally, the day ended with a tremendous retrospective, reflective and prospective presentation of the history and hopeful future of ADAPT, with several heroes and dignitaries from our past and featuring own own Frank Wullel as one of the voices of ADAPT's future. The wrap up was a birthday dance and celebration.

Rarely has an action moved me like this 25th celebration. However, we know that the next 25 years will be even better as we get the Community Choice Act passed. Please consider being a part of this great movement and joining us in September as we return to the barricades in DC!

DRAC Scores a Win on Formula Issues

As reported in past updates (see DRAC's older and oldest news) the Department of Health had a rule the prohibited using Medicaid funding for life saving formula that older children with metabolic disorders would take by mouth. Curiously enough, the Health Department never disputed that the formula was critical for these children, as they couldn't survive on regular food. The issue was that the children would be taking the formula orally. Were they to get the formula via a surgically inserted G-tube Medicaid would fund it. However, surgically inserting the tube presented significant and unnecessary health risks for many of these children. Moreover, using a G-tube removed a significant source of pleasure for these children--that of taking food by mouth, a basic pleasure that most of us would consider a right.

After an emotional press conference with many of the parents who were literally spending themselves into bankruptcy and a meeting with the Department of Health and staff from Senator Hatch's and Bennett's staff the Department of Health set about rewriting these rules. As in most of our battles, the result wasn't a complete victory, but it was a major improvement and win for both DRAC and the majority of these parents. Now, children who need formula that is considered a "medical food" (prescribed by a physician and available only through a pharmacy) because of a metabolic disorder will receive Medicaid funding for the formula, regardless of how they ingest it. This will save dozens of families in Utah of having to make the painful choice of spending themselves into ruin or subjecting their child to an unnecessary surgical procedure or watching their child slowly starve to death.

We will continue to work with the Health Department on two remaining issues of concern. First, children only qualify after they have fallen below the 10th percentile of weight for other children their age. This appears to be too draconian and may very well create unnecessary suffering and risk for children who have to be deprived of needed formula until they are so malnourished that they are below the 10th percentile of weight for other children their age. This is simply too low of a standard and isn't needed to determine medical need--a physician's statement on the child's medical condition and certification that the child can't survive on regular food in any form should suffice for this purpose.

Also, families who qualify for Medicaid do not have any disposable income, particularly if they have a child with a significant disability. Off the shelf formula from grocery stores tends to be very expensive, particularly when feeding and maintaining the health of an older child. However, grocery store formula tends to be much less expensive than that which is only sold through pharmacies and available through prescription. Most doctors, when they find that these families can't afford grocery store formula and that Medicaid won't fund this formula, will go ahead and write a prescription for the more expensive pharmacy formula. This is an unnecessary expense for Medicaid and we believe they will actually save money in the long run if they will fund all formula which is medically necessary to preserve the lives of children who have clearly documented digestive disorders. We will accordingly continue to push for this last change. Still, congratulations are in order to the many families and dieticians who fought for these changes, and who will benefit from them!

DRAC Builds A Coalition to Take on UTA

Many of DRAC's members don't drive and/or don't have personal vehicles and/or can't drive under some conditions. Accordingly, we have adopted the term of "transit-dependent" for our members and others of similar circumstances for whom public transportation is a necessity, not a gas saving option. Thus, when UTA decided to change several of their routes to better serve those who commute for whom public transportation is a choice, and particularly when they chose to do so at the expense of those of us who are transit dependent we channeled our anger and swung into action!

  Frequently DRAC finds itself going at issues alone, or at best with one or two partners. However, the need for transportation   
  is so basic and UTA's blatant disregard for transit dependent riders hurt so many that we were able to build a strong coalition
  of many organizational and individual members who ready to take UTA's leadership to task.

  On September 26 the Coalition held a press conference in front to the UTA main offices, shared stories of how the route
  changes and eliminations had hurt individuals and presented a list of demands, which are as follows:

  1)  Every UTA board member must ride a UTA fixed route at least once a week and to every board meeting.
  2)  Orrin Colby, current UTA Board Chair, must take responsibility for ignoring transit dependent riders.
  3)  Newly created commuter bus routes must return to their fixed route designation with a minimum of one bus per hour.
  4)  A definite date for this coalition to meet with the general manager to change critical routes, beginning with the 9^th East    
       Route to insure a geographically equitable balance in weekend and other services.
  5)  Flextrans riders who live within ¾ mile of former fixed routes will not have Flextrans services withdrawn or curtailed.

  One particular concern was Pheasant Hollow, an assisted living-type apartment complex for individuals with disabilities, 
  whose bus service had essentially been eliminated by UTA. On October 27, members of the Coalition who were concerned
  with this issue met with representatives of UTA, who agreed that this was a serious oversight that needed to be corrected immediately, which they agreed to.

On October 29, members of the entire Coalition met with Mr. Colby the Board Chair of UTA, John Inglish, UTA's General Manager, and other UTA employees, as per demand #4 above, to further discuss our remaining demands. We received the following responses:

Demand #1: Mr. Colby stated that, in making this demand, we seemed to be assuming that UTA Board members don't use the bus system, which he stated was unfair. We then asked that he poll the Board members to find out how frequent and under what circumstances UTA Board members ride or use the bus.

Demand #2: Mr. Colby acknowledged that he was responsible for UTA decisions, while noting that he may occasionally be voting in the minority on some board decision. He also acknowledged that he was the contact person when we disagree with UTA/Board actions.

Demand #3: It was noted that the mistake on the Pheasant Hollow route had already been corrected. We were told that others, including Redwood Road, that they had been made aware of were under discussion and possible revision for a planned December 15 route change. Coalition members were invited to submit other routes that were presenting particular problems, and that these would also be taken under advisement. We were told that a great deal of work and advance planning has to go into these route corrections/changes, so request made at this point may not be addressed until another April route change date. We were promised that by December 1 we would have, in writing, a list of what would be corrected or changed December 15 and what would be corrected/changed in April.

Demand #4 was met with this meeting.

Demand #5. We were told that Flextrans riders whose Flextrans service had been slated for elimination due to the conversion of fixed routes to commuter routes would continue to be "held harmless", meaning their service would remain in place as it has been. Mr. Inglish has been proposing an April "Futures" summit where all possible stakeholders who have an interest and who have or should have responsibility for transportation for persons with disabilities would be invited to work out a longer term solution. This summit should be held buy April, and the commitment was that the hold harmless action would stay in place until that date. We were also promised a written document that would clearly lay out the geographic boundaries of this hold harmless action, specify an "at-least" date to which riders with disabilities will be held harmless and described the status of newly certified Flextrans riders in this geographic area visavis the hold harmless clause.

DRAC and the other members of the Coalition feel that we have received some clear and important commitments from UTA regarding our demands, and a qualified yes to the others, for a qualified yes overall. We look forward to our continuing dialogue and negotiation with UTA over these vital transportation issues. Please contact DRAC if you believe that you have been harmed by the recent UTA route changes.  

DRAC-ADAPT/UTAH Takes on Chicago

September 9-12 the Disabled Rights Action Committee-ADAPT/Utah joined with five hundred of our brothers and sisters from around the country to take our message of support for community services and opposition to forced nursing home "placement" to the American Medical Association, the Governor of Illinois and the The American Federation of State, County and Municipal Employees (AFSCME).

On Sunday, September 9, we heard moving testimony regarding the critical need for accessible, affordable housing in both preventing unnecessary nursing home placements and in facilitating moving away from nursing homes. Unfortunately, we also learned that HUD Secretary Alphonso Jackson hasn't kept his promise to track down our 58% loss of housing vouchers that were set aside at for use by persons with disabilities. These have been lost due to budget cuts, but also by misappropriation by the local housing authorities which administer the vouchers. Mr. Jackson also hasn't keep his promise to with ADAPT three time a year, sending instead an Assistant Secretary and a Deputy Assistant Secretary in his place. With our critical need for housing bumping up against Mr. Jackson's empty promises you can bet that ADAPT will be having more interactions with HUD and Mr. Jackson in the future.

On day 2, Monday, we took over the American Medical Association's (AMA) offices for several hours, as we presented the following reasonable demands:

1)  Endorse the Community Choice Act (S. 799, H.R. 1621) which is federal legislation that would give people eligible for nursing home and/or institutional placement a choice to choose community services instead;

2) Work with ADAPT to develop an action plan that assures that people with disabilities and seniors get REAL CHOICE in long-term care services/supports so they are able to live in the legally required "most integrated setting," and provide the AMA membership with continuing medical education programs about community-based alternatives to
institutionalization;

3) Develop an AMA ethics policy requiring doctors to disclose to their patients any financial interest they have in a nursing facility when they are discussing long-term care with those patients, and to not refer any patient to a nursing home in which the doctor has a financial interest;

4) Require that AMA Board of Trustees and leadership divest themselves of all financial interests in nursing facilities, etc.

One of our members noted that with the stroke of a pen an ill-informed physician can remove all your rights in determining that a nursing home is "medically necessary." However, the AMA, in willfully remaining ignorant, chose to have 55 of our members arrested instead of meeting with our leadership and agreeing to our demands.

On day 3, Tuesday, we blocked the elevators and escalators in a lower level shopping mall that led to the upper state government offices, including the office of the governor. In this case a full day of blocking the entrances led to the Governor wisely agreeing to all of our demands, which were as follows:

1) Commit to permanently close down the state's Lincoln Development Center--some organizations have been fighting to re-open this bastion of segregation.

2) Commit to meet with ADAPT prior to October 17 to discuss our other demands, which are that the Governor will address the state's institutional bias, institute a full "Money Follows the Person" policy and accordingly amend the state law, where any individual who wants to move out of an institutional or nursing home setting will have the opportunity to do so, increase community long-term care services funding by 5% per year for the next five years.

3)  Insure that ADAPT is at the table when the operational protocols are developed for the Illinois Money Follows the Person Demonstration Program.

Given that Illinois ranks near the bottom of the state in funding community-based long term care services, these are significant wins and made our entire action well worth the effort.

On day 4, Wednesday, we took over the building of the The American Federation of State, County and Municipal Employees (AFSCME). Nursing homes and institutional settings
are apparently easier to organize than community attendants, so in sacrificing our freedoms to line their own pockets, or as one of our protesters put it, sacrificing our rights at the 
expense of workers' rights. In taking over their offices we demanded that AFSCME cease their support for re-opening the Lincoln Developmental Center and sign a statement of 
support for the Community Choices Act. Instead, they sent out a statement in support of institutional settings, asking that we sign it. When we refused, they had 155 of us arrested.

As generally happens, we won some and lost some. As stated above, what we won was worth all the effort. As for the losses, we will be back! Join us as we take up the cause and 
the fight in Washington DC April 26-May 2, 2008 as we celebrate ADAPT's 25h anniversary of fighting for civil rights, first for accessible transportation, and now to FREE 
OUR PEOPLE!

DRAC/ADAPT Loses a Great Warrior

If it's possible to given them hell in Heaven, Ken will...

It is our sad duty to report that one of DRAC's and ADAPTS greatest warriors (and my hero) passed away on June 20, 2007 a few minutes before 2 PM of a massive infection. He was surrounded by family and a few fellow DRAC members. Ken will be sorely missed for many things and on many levels. He was a devoted family man, whose children were in turn devoted to him, staying him constantly in the last few weeks of his life. He was courageous, having faced many daunting battles both in his years as a union man and as a DRAC/ADAPT warrior. In doing so, he had been arrested many times and took pride in his willingness to face any battle. He was a great leader and had a unique way of seeing to the core of complex issues. He was plain spoken, both when dealing with fellow DRAC members and when dealing with government leaders. He had a way of pulling many diverse viewpoints and personalities together, without alienating any. He had a tremendous sense of humor. He had a heart of gold and would do anything or give anything to anyone. He had a tremendous sense of social justice. He truly loved his family, friends and fellow DRAC/ADAPT warriors, while feeling great outrage against those who perpetrated social injustices.

Just a couple of typical "Ken moments". When protesting at HUD agains Mel Martinez, Mr. Martinez let us know that one of the problems he had with MiCASSA was its name. Ken's response was, "Well hell, Mel, we'll name it after you if you'll support it." I also remember Ken taking me under his wing during my arrest in Washington DC. He wanted to make sure we all took our pictures in front of the Senate Cafeteria sign, where we we temporarily held, which stated "No picture taking allowed".

Ken faced death the way he faced all other great and daunting battles and challenges in his life, with courage, humor and good grace. While, as I said above, we will miss Ken greatly, he left DRAC the gift of two of his children, Frank and Tamera, who share many of Ken's great qualities, and who also serve on our Board.

 

Some who visit this site won't have known Ken. If so, I feel sorry for you--you have missed out. For those who did know Ken and would like to share thoughts or stories of him we would all appreciate your doing so. An upcoming edition of our newsletter will memorialize Ken, so please let us know if we have your permission to publish anything you may care to share. Click her to email us your memories of Ken. In addition to publishing them we will make them available to Ken's family. Long live Ken's legacy--Free Our People!!  

DRAC Storms DC

Once again DRAC-ADAPT/Utah members joined our ADAPT brothers and sisters in Washington, DC to send a clear message--pass the Community Choices Act (Formerly MiCASSA), if your not going to pass it immediately, at least hold hearings on the Community Choices Act, and hospitals can no longer do business as usually in mindlessly discharging people to nursing homes in lieu of doing the work necessary to find community alternatives, when these are clearly feasible and much healthier. All three messages were heard.

We started off on Sunday, April 29, with our "Fun Run". Many DRAC-ADAPT Utah members put in many long laps! Our thanks to all our friends who pledged and donated money. On day two, we stormed the House Rayburn Building--inside and out. Three smaller contingents of ADAPT took over the offices of Representatives John Dingell (D-MI) and Joe Barton (R-TX) and a hearing room. Several more were outside, chanting and gumming up the House works. We were demanding that Representatives Dingle and Barton, in conjunction with their colleagues, agree to hold hearings. We didn't experience immediate success in this effort, rather 99 of our members got arrested, in rather short order. However, we think the action, along with the arrest, were heard loud and clear. We are proud of Frank and Tamera Wulle and Darla Ball, first-time arrestees. Our intrepid arrestees, which also included Frank Wulle, Ricki Landers and Lopeti Penima'ani.

Tuesday, May 1, HUD Secretary Alphonso Jackson, after being the repeated target of several ADAPT actions, took the initiative to meet with 500 ADAPT members in our Washington, DC Hotel. By the end of the morning, Mr. Jackson stated unequivocally that "Fair Housing is a right." He spoke of his own civil rights struggles, noting that he still bears the scars of police dogs bite wounds, and he made a number of commitments to our members, including:

	Inform ADAPT, before our September Chicago action, how many vouchers for persons with disabilities he has recovered of those that have been lost to the disability community from federal budget cuts and misappropriation of vouchers by local entities.
	Vowing to eliminate the "outrageous" level of discrimination in housing against persons with disabilities. HUD recently reported that 40% of the Fair Housing complaints filed with HUD are based on the "protected class" of disability, surpassing for the first time in history, the percentage of complaints filed on the basis of race.
	A promise to facilitate a meeting between ADAPT and Representatives Barney Frank (D-MA) and Maxine Waters (D-CA). They are chairs of the committee and subcommittee responsible for legislation affecting changes to the Section 811 program. ADAPT is calling for a restructuring of the Section 811 program  to provide affordable, accessible, integrated housing, as well as to increase the number of vouchers available to persons with disabilities, both of which will require action by Congress.
	Work with ADAPT on implementing our Access Across America program, which would provide housing vouchers to persons with disabilities who are attempting to move our of nursing homes and ICF-MRs.
	A promise to meet with ADAPT three times a year.

This is a tremendous victory, as previously obtaining any kind of a commitment from Secretary Jackson has been incredibly difficult, and has he has previously described the Section 8 program we rely on as a "cancer."

Later that afternoon we took over the DC offices of the American Hospital Association, demanding that they meet with our leadership within 20 days, with the purpose of sending out a message to our nation's hospitals that they have to do a better job of discharge planning. There are many, many tragic incidents where individuals could finish their recuperation and rehabilitation at home, with just a little creative use of attendants and outpatient rehab professionals. However, while it ruins lives, it is easier for hospital social workers to simply dump individuals into nursing homes. From there, nursing home operators find incredibly imaginative ways to stretch a three month rehab stay into a lifetime sentence. Herculean efforts are often required to get people out of nursing homes once their family and neighborhood relationships have been destroyed and their homes or apartments lost, as compared to the slight efforts it would take to keep individuals from going into the nursing homes in the first place. This action was an immediate success. After only a couple of hours the Hospital Association agreed to meet with our leadership to look at more effective discharge planning. We know they will keep their word, because their main offices are in Chicago, which, by coincidence is where we will all be six months from now.

Wednesday, May 2--our last day, was more mundane, but equally fruitful. During our last major action in Nashville, individuals from around the country gave very personal, extremely compelling testimony of how they became trapped in a nursing home, horrors experienced during their nursing home incarceration, their struggles to be free and for some, life outside the nursing home. Some of the more powerful moments in this testimony were recorded onto a DVD, and we distributed this, along with information about the Community Options Act, to all members of congress. It was during these visits that we were told that an agreement had been reached to hold the hearings we have been demanding. A very satisfying conclusion to our action.

The Community Choices Act is extremely important to us. We are making progress. We are getting closer. Victory is assured, it is only the time table that is in question. Please help us hasten passage of the Community Services Act and help us free our brothers and sisters in nursing homes by joining us in Chicago September 9-13.

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