Living Independently

EDITOR’S NOTE: Yesterday the Colorado House Health and Environment failed to pass SB11-170 out of committee by a 6 to 6 vote. CPWD Executive Director Ian Engle was at the Capitol to testify. These are his written comments of what more he would like to say to the committee.

Greetings House Health and Environment committee members:

Premise: In these tough economic times we all need to make sacrifices for the greater good.

Ian Engle

SB170 specifically addresses the mandatory 3% increase in statute for Medicaid reimbursement rates to nursing facilities and the extra steps the legislature must take to consider making cuts to Medicaid reimbursement rates for nursing homes.  Currently, our state is affirming an institutional bias, because the mandatory increase is in Colorado statute for nursing homes and not for home and community-based long term care providers.  I do not believe we want to be recognized as a state that adheres to such a blatant institutional bias in the midst of a culture that is looking to support home and community based options for long term care as a means of not only being morally responsible, but also fiscally responsible.

We all need to be making sacrifices evenly, and that is not currently the case in Colorado.  If the answer is to provide a mandatory 3% increase in statute for all Medicaid long term care providers, that is fine with me, but one way or another we should not leave this big ‘institutional bias’ target on our state.  SB170, if passed, would effectively remove this target by establishing an equitable system for fiscal accountability.

Please consider bringing SB170 out of ‘limbo’ so we can address the institutional bias and establish a system where everyone is pulling weight evenly.  I believe I can speak for my colleagues copied on this message when I say that we are ready to work hard and make sacrifices in the interest of an ethically, morally and fiscally sound Colorado.  SB170 is an imperative first step in that direction.

Thank you for your time and consideration with regard to this important matter that affects not only how we do business in this state, but also how we measure up on a national scale.

Feel free to contact me at your convenience with any questions, concerns or helpful feedback.

Respectfully,

Ian Engle
Executive Director
Center for People with Disabilities

Around Colorado, Independent Living, System Change Ian Engle, SB 170

FOR IMMEDIATE RELEASE, MONDAY, MARCH 14, 2011
WWW.JUSTICE.GOV, Civil Rights Division (202) 514-2007 TDD (202) 514-1888

Justice Department’s New ADA Rules Go into Effect on March 15, 2011

ADAPT protest at the Department of Justice 2009

WASHINGTON – Revised regulations implementing the Americans with Disabilities Act (ADA) will take effect tomorrow, March 15, 2011, the Department of Justice announced.  The revised rules are the department’s first major revision of its guidance on accessibility in 20 years.

The regulations apply to the activities of more than 80,000 units of state and local government and more than seven million places of public accommodation, including stores, restaurants, shopping malls, libraries, museums, sporting arenas, movie theaters, doctors’ and dentists’ offices, hotels, jails and prisons, polling places, and emergency preparedness shelters.  The rules were signed by Attorney General Eric Holder on July 23, 2010, and the official text was published in the Federal Register on September 15, 2010.

The department is also releasing a new document, “ADA Update: A Primer for Small Business,” to help small businesses understand the new and updated accessibility requirements.  In addition, the department is announcing the release of a new publication explaining when the various provisions of its amended regulations will take effect.  Both documents will be available tomorrow on the department’s ADA website, www.ada.gov.

“The new rules usher in a new day for the more than 50 million individuals with disabilities in this country,” said Thomas E. Perez, Assistant Attorney General for Civil Rights.  “The rules will expand accessibility in a number of areas and, for the first time, provide detailed guidance on how to make recreation facilities, including parks and swimming pools, accessible.”

The new ADA rules adopt the 2010 ADA Standards for Accessible Design, which have been retooled to be more user-friendly for building code officials, builders, and architects, and have been harmonized with state and local accessibility codes.  The 2010 standards also include, for the first time, standards on making swimming pools, parks, golf courses, boating facilities, exercise clubs, and other recreation facilities accessible for individuals with disabilities.

Entities covered by the ADA have until March 15, 2012 to comply with the 2010 Standards.  In addition to adopting the new ADA 2010 Standards, the amended regulations contain many new or expanded provisions on general nondiscrimination policies, including the use of service animals, the use of wheelchairs and other power-driven mobility devices, selling tickets for wheelchair-accessible seating at sports and performance venues, reserving and guaranteeing accessible rooms at hotels, providing interpreter services through video conferencing, and the effect of the new regulations on existing facilities.  The compliance date for the all the new nondiscrimination provisions, except for those on hotel reservations, is March 15, 2011.  Compliance with the hotel reservation provisions is not required until March 15, 2012.

“ADA Update” and “ADA 2010 Revised Requirements: Effective Date/Compliance Date” are the first of several planned publications aimed at helping businesses, not-for-profit organizations, and state and local governments understand their obligations under the amended Title II and Title III regulations.  Individual print copies of the Effective Date/Compliance Date publication can be ordered from the ADA Information Line (800-514-0301 voice or 800-514-0383 TTY).

For more information about the ADA, call the Justice Department’s toll-free ADA Information Line at 800-514-0301 or 800-514-0383 (TTY), or access the department’s ADA website at www.ada.gov.

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ADAPT, Around the country, System Change ADA

By Tim Wheat

Ed Milewski at the Senate Hearing for SB 170

I would like you to read Mr. Ed Milewski’s story about his accident and his “My Unbelievably Long Hill Back” [CPWD Blog Feb. 23,2011]. He tells a good story of his struggles and accomplishments. I only know the story from the nursing home to Ed moving into his own apartment, but I believe it is a good detail to include with Ed’s description.

I met Ed in May of 2009 and like a lot of people I meet, he did not want to live in a nursing home. I always try to explain to people the difference between wishing NOT to live in an institution and being motivated to take responsibility and live independently. Ed said he was motivated.

Early on Ed seemed to me a little bothered by my request that he use the bus. I ask people to “practice not living in the nursing home,” and to get out and do typical things on their own. I also encourage people to “pretend that you don’t live in the nursing home,” to persuade them to make their own decisions and flex their independence. These requests are not just games or another bureaucratic hoop, but I believe it is a good gauge of how someone will do on their own. The individual has little opportunity to exercise their own decision-making in the institution.  They have to confront the question of what they will do without staff down the hall to consult on each question.

Ed had used the local paratransit to get to his appointments and he insisted that he could ride the bus and he only used paratransit because it was easier. I believe that Ed had come to a crossroads. He wanted to make the decisions himself but everyone around him was suggesting the easy route and the safe route. Ed knew which decisions the medical staff would support and suggest and they had become the default first option.

The problem was that the safe and easy methods also characteristically would leave Ed to depend on someone else to accomplish the goals. “Special Transit” would provide him with transportation, The Center for People with Disabilities would help with paperwork, and local charities would provide money. Rather than becoming less reliant on others, I believe that Ed could clearly see that he was becoming more dependent on the people around him.

When Ed came to the Center for People with Disabilities to see me I would always ask him if he had gone anywhere on his own. Truthfully, I believe that Ed was becoming angry with me about this question. Ed was working hard at getting out, but I felt that my question was adding to his frustration. Ed was aggravated over the time that it was taking to make this move and some frustration over having to work with other people’s timetables and schedules. In the middle of him trying to pull all this together, I was asking if he had found the time to make exploratory trips on the bus.

In early June Ed agreed to ride the bus with me. What I believe he discovered was that it was not easy; that you have to know schedules and read maps. Using public transportation can raise your anxiety; you can get lost, miss your stop, miss a bus, or take the wrong bus. Especially if you are not familiar with the area you may constantly question where you are as well as having relentless anxiety of how you get home.

However, with the risk also comes freedom. Ed took on the transportation challenge and began to go places regularly by himself. He was able to confront the problems and concerns with practical solutions. Ed learned to back his wheelchair across the street to counteract the crown, turning around at the midpoint of the crosswalk. He worked on his mobility each day although the nursing home had stopped providing him with any rehab. The barriers that Ed had found frustrating began to melt away as he exercised more and more independence.

To me it became clear that Ed was going to make a sustainable home in the community. He had turned a corner and although there was a lot of work to do, he seemed less apprehensive and less frustrated by the goals ahead. Ed no longer looked to me as the expert. He was not dependent on either my suggestions or my timetable. If he did not like my plan, he would make his own.

Ed’s freedom and self-direction did not make him more distant. On the contrary, I believe he found more value in my experience as he took more control of the transition and his life. I became more valuable to him as a guide than as a director. The end result was precisely what the program had intended to achieve: A sustainable move into the community; independence.

Unfortunately it can be easy to apply a more paternalistic approach to the transition and simply attempt to solve the problems that someone faces rather than teach independent living skills. Someone living in a highly structured environment like a nursing facility often does not feel self-assured, ready to make decisions or feels they cannot act without the permission of some medical staff. “They won’t let me,” becomes an isolating mantra for many people and a path to stagnation and failure is simply to wait for someone else to approve your actions.

The final day of August, Ed moved out of the nursing home and into his own apartment in Boulder. I know there was aggravation and confusion but I really don’t remember any big issues with the move. I visited Ed often that month and less so since that time until now I hardly see him at all. I am very proud of the role I played in Ed’s transition out of the nursing home but it is difficult to explain or take credit for any single part of the episode. I have to admit that it was Ed that basically did everything. Ultimately the circumstances that I am attempting to explain here is that by challenging Ed to accomplish what he could, the final success was more lasting and definite.

Ed and Sen. Agular

Around Colorado, Independent Living, System Change CTS, Ed Milewski