Incitement

Volume 20 No. 3                 A Publication of ADAPT                 Summer 2004

ADAPT/Incitement

1339 Lamar SQ DR #101

Austin TX 78704

(512) 442‑0252 v/tty

(512) 442‑0522 fax

 

         Incitement is produced from the offices of Topeka Independent Living Resource Center (TILRC). Articles, letters, compositions, displays and photos are encouraged. Please contact Tessa Goupil for deadlines for submission of materials. The Editor reserves the right to edit or omit any material that is submitted. For more information, contact Tessa Goupil at TILRC or Stephanie Thomas at ADAPT.

 

Topeka Independent Living

Resource Center, Inc.

501 SW Jackson St., Suite 100

Topeka, KS 66603‑3300

(785) 233‑4572 v/tty

(785) 233‑1815 tty

(785) 233‑1561 fax

 

NGA = No Gimps Allowed?

         Thou Shalt Honor was the theme of the National Governor’s Association “Public Forum” on long term care at their conference July 16 - 20, 2004. Yet nothing could be further from the truth. The “public” included a select handful of puppets invited for their dog and pony show. For the rest of us, there were:

 

w Police barricades of buses to keep people out,

w Metal detectors and confiscation of personal belongings,

w Instructions for members not to speak with ADAPT,

w NGA barricading themselves inside the twin towers of the Westin Hotel,

w A media advisory not to bother the NGA or to speak with any protestors,

w Stonewalling on ADAPT’s request to meet and to have our issues addressed.

 

         1.6 million people languish in nursing homes waiting for their civil right to receive services in the most integrated setting. The Federal government even acknowledges at least 276,333 of them want OUT. Meanwhile the Governors’ and their entourages snuck off in boats across the sound to party with Bill and Melinda Gates, and shut down the Amgen Business Campus outside of town for part of a week so they could be entertained by the Temptations.

         However, like David and Goliath for some – like Frodo and Sauron for others – ADAPT would not be silenced by their strong-arm tactics. And indeed we began to see cracks in their walls.

         Though Seattle is a beautiful city, folks with disabilities beware: they have hills there that rival San Francisco! It is a welcoming city though, and despite concerns about being tear gassed and corralled into pens, the local folks showed strong support for ADAPT as we took our issue to the Governors of the nation.

         In Seattle, we moved our issue to a new level in one of the most unusual actions in a long time. After almost a decade of pushing the National Governor’s Association (NGA) to support our issues, we put our concerns in a resolution and blocked their convention as they tried to stonewall us. And surprise, surprise, their walls began to crack!

 

Remembering the Dead

         Day one, after an excellent series of trainings, we gathered and marched through Pike’s Market (thanks to local hospitality!) and on to Victor Steinbrueck Park. We gathered overlooking the Puget Sound, Olympic National Park, and Mount Rainier; totem poles, folk art, homeless folks and tourists from many nations surrounded us. Local and National organizers spoke of the struggles to liberate ourselves and others from nursing homes and other institutions, and our vision of freedom for folks still trapped inside. Disability singers and songwriters serenaded the crowd with our anthems. Frank Lozano lead us in a celebration ceremony memorializing and drawing strength from the many brothers and sisters we have lost recently. Seven people who were on the march with us a year ago are gone today, and others too are gone. Yet, at the same time, at least one ADAPTer-to-be was quickening in the womb with us that day as well.

 

NGA = No Good Answers

         Day two, we took the bull by the horns, so to speak, and went to deliver our resolution to the Governors themselves. Many of our colleagues from across the US had tried to get the message in to their Governors through their offices at home.

         But when ADAPT sent a delegation of 50 individuals to the Westin Hotel to present one resolution to each State’s Governor, they were turned away at the door. (The Westin, ironically, is composed of 2 towers that loom in the background of the downtown Seattle skyline.) When the 50 turned around the police had pulled barricades between their little group and the front doors!  

         While the 50 were heading out, the rest of us met with Mr. Salo, the Health Policy person for the NGA. His Secret Service/Police escort accompanied Salo to the front of the meeting room, where ADAPT leader Barb Toomer asked him if he would bring the resolution to the proper people within the NGA, but Salo just kept saying he could not introduce the resolution nor could he pass it. We already knew this and that is why we had only asked him to deliver it. Such non-responsive answers grew old quickly and typified the NGA’s failure to listen or care what was being said. So we escorted Salo and his guards out of the room.

 

Buses Blocking Us?

         Some 450 strong we soon came to support the original 50 over at the Westin Hotel, only to find city buses blocking the intersections around the hotel.

          “If at first you don’t succeed …” being a motto of ADAPT, we set up groups outside and started chanting, just to be sure our message was not missed.  Soon the more artistic and agile among us were writing giant messages in chalk on the streets, just in case the Governors couldn’t understand the chants. Our inside moles told us you could hear us far up inside their hotel and the messages were easy reading from the 10th floor even without glasses! The day wore on. Threats were made. Nasty rumors spread. But ADAPTers did not wear out. For five hours we held our ground.

 

The Crack in the Walls

         About 2 pm it seemed we were on the brink of arrests. Suddenly Governor Edward Rendell of Pennsylvania defied the NGA party line of stonewalling us and came out to talk. He committed publicly to get the resolution introduced and voted on at the February NGA meeting, and spoke about it at length at the meeting inside. Having achieved our goal of the action, we left for the day.

         But Rendell was not completely alone in his courage to break ranks and speak with the ADAPT “untouchables.” Two ADAPTers from Mississippi called their Governor Haley Barbour in the Westin Hotel and were connected right up to his room, his wife answered and the Governor agreed to meet later that day. Kansas Governor Kathleen Sibelius called during the protest and asked to have the resolution faxed to her; she even sent Kansas ADAPTers a fruit basket. Montana Governor Judy Martz had key staff meet with Montana ADAPT members.

 

10 Worst States Revealed:

Two in NGA Academy!

         Day three was Thou Shalt Honor day for the NGA. In honor of that, ADAPT held a press conference at which we announced the 10 worst states in the nation for providing community long-term services and supports. (See list in this issue.)  At an excellent event, held in front of the Westin while the NGA held their “Thou Shalt Honor” dog and pony show, ADAPT representatives of the 10 Worst States spoke eloquently of why change was so important.   

         Just before their conference, the NGA announced the formation of the Academy, a group of 8 states which will be working on designing best practices to balance Long Term Care systems. Ironically, 2 of the 8 states picked for the Academy (Georgia and Louisiana) are among the 10 Worst states, and 2 others (Iowa and Virginia) are in the next 10 worst. One can only wonder at what such an Academy will develop! Best Practices? Best for who? What are these people thinking?

         After the press conference ADAPT lined up, as only ADAPT can, and marched through the hills and streets of Seattle to support another important campaign: stopping the cuts to Section 8 – the rental assistance program.  Surrounding the front of the federal building where the regional HUD office is located, ADAPTers were set for another long afternoon with street theater, chants, and more. But seeing the crowd, the Regional Director rushed down immediately and agreed to fax the message to the National HUD Office!

 

What’s Next? 

NGA = Need Governors’ Action!

Now we have work to do at home!

         We must each get our Governor in our state to support the resolution. In some cases this will mean making sure our Governor has a better understanding of the issues. This is important work not just for getting the National Governors Association to support the resolution. This work will help to make sure that states don’t destroy community-based services as they trim their budgets. 

         Visit with your Governor. Show him/her how many people from your state are stuck inside, wanting to get out! If you need the numbers contact us (adapt@adapt.org or 512/442-0252.)

            And start knitting your winter cap, scarf and gloves because we have a date in February to join the NGA for the vote on our resolution!

 

ADAPTing the ANA:

American Nurses Association Board Code of Silence Breached

Broken Promises To ADAPT Challenged

By Gordie Haug

         On June 27, eleven ADAPTers made the 660 mile trip across Minnesota to the Minneapolis Convention Center for the American Nurses Association (ANA), Convention. We found the nurses eager (most of them) to learn of the ANA Board of Directors’ refusal to support MiCASSA. JJ Haug and myself held high signs reading “ANA BOARD: Let your people know… about MiCASSA”. We were thrown out of the convention center, but not before we had handed out about 30 packets on nurse delegation/assignment and MiCASSA. That caused quite the stir. About two dozen more nurses followed us outside to get their packets.

         We arrived at 11:15am, perfect timing since they broke out of morning session at 11:30! By the time they started their afternoon session at 4:00pm, 200 packets had been distributed. We asked that they share it with their friends. We talked to one nurse that was in D.C. last ADAPT action and she said she remembered that the board was to do more than just ignore our demands. She said “good job… and keep up the good work”.

         Our consensus was that the union nurses supported delegation and assignment and the non-union nurses did not.

         We talked to two board members that knew nothing about the decision not to support MiCASSA, and many, many others that said they would bring it up at the afternoon session. Some states that said they already have delegation and assignment were: Kentucky, New Jersey, Ohio, New York, and Iowa. Our troops canvassed all three entrances/exits to the convention center. We left when they went back into session at 4:00 pm. We did collect a great souvenir of the action, our own ANA Delegates Badge.

 

FREE OUR PEOPLE!!!

 

COMMUNITY SERVICES AND

SUPPORTS RESOLUTION

 

         Dear Friends of Community Services:

 

            This is a resolution that ADAPT proposed and Governor Rendell will introduce for action at the NGA Winter Conference in February 2005. Over two million people with disabilities, old and young, with physical, mental and/or cognitive disabilities are warehoused in nursing homes and other institutions because of the lack of home and community services. ADAPT believes the NGA and each individual Governor play an integral part in the reforming of this institutionally biased long term care system.

         ~The ADAPT Community

 

Commitment To Community-Based

Long Term Care Services and Support

 

WHEREAS millions of people with disabilities and older Americans currently need or will need long term services and supports to live in the community and this number is expected to grow at a rapid pace over the next three decades; and

 

WHEREAS the current long term care system is fragmented, overly medicalized, bureaucratic, expensive with an institutional bias that unnecessarily forces people with disabilities and older Americans in nursing homes and other institutions; and

 

WHEREAS the Supreme Court in the Olmstead vs. LC & EW decision ruled in 1999 that people have the right to services in the most integrated setting; and

 

WHEREAS the American public overwhelmingly supports long term care services and supports be provided in their own home and communities; and

 

WHEREAS the reform of the long term care (services and supports) system must be a cooperative partnership between the federal government, the states and the disability/older community,

 

THEREFORE BE IT RESOLVED that the National Governors Association, NGA, by a vote of the membership and the Executive Committee supports the following:

 

A) The current long term services and support system has an institutional bias that must be reformed through a cooperative effort by the federal government, the states and the disability/older community including those who use services; and

 

B) The long term services and support system must include the principles that home and community services and supports are the first priority and that support services should be provided in the most integrated setting; and

 

C) No person with a disability or older American should be forced into a nursing home or other institution because of the lack of integrated home and community options; and

 

D) People with disabilities and older Americans must have full inclusion in the design, implementation and review of the long term services and support system; and

 

BE IT FURTHER RESOLVED that the NGA supports the passage and funding of the Medicaid Community Attendant Services and Supports Act, MiCASSA (currently S 971 - HR 2032) and legislation that include the Money Follows the Person initiative (currently S 1394 - HR 1811); and

 

BE IT FURTHER RESOLVED that the NGA work with the individual states to assure that the Supreme Court’s Olmstead decision is aggressively implemented and that the measure of this implementation be, in a year, how many people have gotten out of nursing homes and other institutions and how many people have been diverted from nursing homes and other institutions; and

 

BE IT FURTHER RESOLVED that the NGA work with the states to assure that any 1115 waivers submitted by a State should have statewide public hearings before development and submission to HHS, and that the 1115 waiver process should not be used to undercut current community Medicaid services and federal protections; and

 

BE IT FURTHER RESOLVED that the NGA supports reform of the long term services and support system that does not result in block granting, capitating or otherwise reducing or eliminating funding to the states or the removal of the current national Medicaid protections.

 

Passed this day ____________________________

 

ADAPT Home and Community Service

Options Report on the Ten Worst States

July, 2004

         ADAPT, the nation ’s largest activist grassroots disability rights organization, periodically ranks the states in how well they are providing options for people with disabilities and older Americans to live and receive support services in the community.

         This ranking comes 5 years after the Supreme Court ruled in the Olmstead vs LC & EW case that people with disabilities, regardless of age had the right to home and community services in the “most integrated setting”.

         The results, though not scientific, give an accurate reflection of the relative standing of each state in its provision of home and community services. ADAPT has given a numerical ranking for the worst ten states and follows that with a grouping on the next 10 states that are doing a poor job in providing home and community services.

 

         ADAPT used these public sources of information to rank the states:

Medstat - CMS 64 data on Medicaid Long Term Care Expenditures in FY 2003

    (Oct 2002 through Sept 2003) Released May 25, 2004

• National Study of Disability Finance, Preliminary data ( 2004)

University of Colorado, Dept of Psychiatry

• Advocate’s Survey Assessment of their states services. (ADAPT, June 2004)

         ADAPT’s analysis weighed various long term care factors based on published data and the evaluation of people with disabilities (old and young) of their state’s provision of long term services and supports.

         Some of the factors looked at in the ranking were:

• Institutional spending versus community spending ratio; (national ratio is 67% institutional – 33% community)

• Nursing Home spending per capita;

• Community spending per capita;

• ICF-MR spending per capita;

• Ranking of State spending on Community Long Term Care.

 

Ten Worst Ranking States

 

     1. Mississippi

     2. Nevada

     3. Louisiana

     4. Tennessee

     5. Illinois

     6. Georgia

     7. Alabama

     8. New Jersey

     9. Florida

     10. District of Columbia

 

The Next Ten Worst States:

     Pennsylvania

     Indiana

     Texas

     Ohio

     Iowa

     Kentucky

     Virginia

     Nebraska

     Arkansas

     Missouri

 

ADAPT's Ten Worst States Summary Background

Mississippi:

         Approximately 87% of long term care spending goes for nursing homes and other institutions. 51st in community fiscal effort for persons with developmental disabilities. 47th in overall spending on community services for people with disabilities. 17th in per capita spending on nursing homes. 46th in spending for Medicaid waivers. Currently has an Olmstead lawsuit filed against the State for not complying with the Supreme Ct decision.

Nevada:

         Approximately 67% of long term care spending goes for nursing homes and other institutions. Lowest spending per capita on all community services. 32nd in community spending for persons with developmental disabilities. 49th in spending on Medicaid waivers.

Louisiana:

         Approximately 81% of long term care spending goes for nursing homes and other institutions. Ranked 51st in the country in Medicaid community spending. 39th in Medicaid waiver spending. 4th highest spending per capita for ICF-MR facilities for people with developmental disabilities.

Tennessee:

         Ranked 48th on Home Care per capita spending. 39th in Medicaid community spending. 39th in spending for persons with developmental disabilities. 46th in spending for people with physical disabilities. 45th in spending on Medicaid waivers. Since Tennessee provides some long term care services under a managed care model it is not possible to get a true ratio of institutional versus community spending.

Illinois:

         Approximately 80% of long term care spending goes for nursing homes and other institutions. 46th per capita spending in community spending. 46th in community spending for people with developmental disabilities. 47th in overall community spending. 41st in spending on Medicaid waivers.

Georgia:

         Approximately 79% of long term care spending goes for nursing homes and other institutions. 48th in fiscal effort for all community services. 36th in spending for people with developmental disabilities. 47th in spending on Medicaid waivers.

Alabama:

         Approximately 77% of long term care spending goes for nursing homes and other institutions. 46th in fiscal effort for all community services. 42nd in spending for people with developmental disabilities. 37th in spending for Medicaid waivers.

New Jersey:

         Approximately 76% of long term care spending goes for nursing homes and other institutions. 7th highest spending per capita on nursing homes. 46th in spending on community services. 50th in community fiscal effort for persons with developmental disabilities. 33rd in spending on Medicaid waivers.

Florida:

         Approximately 74% of long term care spending goes for nursing homes and other institutions. 43rd in per capita spending for community services. 31st in spending for persons with developmental disabilities. 40th in spending for Medicaid waivers.

District of Columbia:

            Approximate 90% of long term care spending goes for nursing homes and other institutions. 2nd highest spending per capita on nursing homes. The highest per capita spending on ICF-MR facilities. 4th in per capita spending on Home Health. 11th in total capita spending on community services.

 

End the Institutional Bias: No More Stolen Lives!

MiCASSA, Money Follows the Individual and More!

Testimony of the ADAPT Community Before the

Senate Finance Committee, Washington DC. April 6, 2004

Presented by Bruce E. Darling

         Good Morning. My name is Bruce Darling, and today I am testifying on behalf of the ADAPT Community and the many thousands of people with disabilities who want to have a REAL CHOICE so that they may live fulfilling and productive lives in the community.

         I am the Executive Director of the Center for Disability Rights (CDR), an Independent Living Center based in Rochester, New York, which provides community-based services that support people with disabilities in the community and advocates on disability issues. About four years ago, CDR began to formally transition people out of nursing homes. Since that time, our Center has helped over 100 people return to community living.

         Over the last few years, I have also trained literally hundreds of people from 37 different states and the Territory of Guam on how to assist people with disabilities to return to community living from institutional settings. As I have traveled throughout the country, I have heard the same stories from people who had years of their lives stolen by a system that supports institutions over individual rights.

• People who were separated from their families,

• People who lost their homes,

• People who lost their freedom and thought their lives had ended.

         People with disabilities and our allies are fighting the institutional bias, but conviction, training, and hard work are simply not enough. We need you to take action and establish a national Community First policy! You have the power to end the institutional bias and assure that there are no more stolen lives.

Problem Statement and its

Impact on Real People

         Our long-term care system has remained essentially unchanged since its creation nearly 40 years ago. No one would have guessed that today this system would warehouse over 1.4 million Americans in nursing facilities and 110,572 in ICFs, or Intermediate Care Facilities for the Mentally Retarded.

         The system was built on a medical model. At the time of its creation, individuals with disabilities were considered patients who needed to be cared for. Over the years, the medical model has added costs, requiring medical staff to do tasks which could be done by an unlicensed attendant either through delegation or assignment of a health professional. In this system, health-related tasks are often done by a nurse, who charges Medicaid over $100, rather than an attendant who is billed at only $15.

         The medical model fostered a system where services were made available based on diagnosis, creating fragmentation and service gaps. I worked with a woman named Lisa Cyphers. She wanted to be at home rather than a nursing home. To go home she needed support services that were provided under the state’s Traumatic Brain Injury waiver, but because she had Multiple Sclerosis she was not eligible for them. Even though she had the same exact functional needs, she wasn’t eligible for the services to get her home.

         Over the years long term care services have become even more fragmented. Attempts at modernizing the system, including the development of new programs and a multitude of Medicaid Waiver programs, have created a disjointed mish-mash of services, which vary from state to state, and even county to county.

         States may have a dozen different waivers and a complicated array of services that even the most skilled social worker couldn’t navigate.

         Our spending in long term care clearly illustrates the institutional bias. According to 2002 Medstat data, 70% of the $82.13 billion that is spent on long term care services goes to institutional services, while only 30% funds community services and supports.

         The institutional bias is demonstrated on a personal level as well.

         Medicaid rules allow individuals who are in nursing facilities (or deemed eligible for a nursing facility and receive services through a Medicaid Waiver) to retain income up to 300% of the Supplemental Security Income (SSI) federal benefit rate, nearly $1,700 per month for a single person. By comparison in most states, individuals who need personal care or home health care are only allowed to retain one third of that amount.

         If an individual’s spouse is institutionalized in a nursing home, federal rules allow them to keep at least some of their income and resources without totally impoverishing themselves. The same is not true for community-based services. As an example, we worked with Phyllis Patnode. As a 50-year-old woman, Phyllis was forced to leave her husband and home and go into a nursing home because her husband worked and she didn’t want to financially devastate him and her daughters.

         A fundamental problem is that Medicaid funding for long term care services is securely tied to the institutions. States must provide institutional services, like nursing home care, while community-based services are completely optional. To provide alternatives to nursing homes or ICF-MR facilities, states must apply for a Medicaid Waiver, which means that the federal government is agreeing, on a case by case basis, to waive certain Medicaid requirements in order for that state to provide home and community based services. There are often no waiting lists for nursing homes. However, when states apply for a Medicaid Waiver, the federal government authorizes a certain number of “slots”, which results in waiting lists for Home and Community Based Medicaid Waiver Services.

         Because institutional services are mandatory, states cannot cut their funding. We are in tough fiscal times. States have no choice but to cut community based services. Even states that want to provide less expensive community-based alternatives are prevented from doing so by a federal policy that mandates institutional care.

         In addition to all of this, there is one very important reason we must change this system. It isn’t what people want.

         According to the data from the Centers for Medicare and Medicaid Services, nearly 19% of individuals in nursing homes have expressed an interest in returning to the community. This information was collected by the nursing homes themselves. From our experience, the number of people who want to live in the community is actually much higher. We have the data that shows this. According to Barriers to Independence, a study conducted by Access Living and the Center for Urban Research and Learning at Loyola University in Chicago, 64.5% of the nursing home residents that were surveyed expressed that they would prefer to live somewhere else if the opportunity were available.

Personal Impact: Real Voices

         Last year, as part of our Stolen Lives Campaign, ADAPT began documenting the names and stories of people from nursing homes and institutions. 

These stories document the voices of people institutionalized as children:

         Like Leonard Roscoe, from Georgia. Leonard was put in the institution in 1972 after living in hospital the first 3 years of his life. Leonard has Osteogenesis Imperfecta (brittle bones). He was institutionalized for 35 years before he got out. 

         Like Patrick King from Austin, Texas. When Patrick was eight he got hit on the head in a schoolyard accident resulting in multiple disabilities. He ended up in a Texas State Mental Health Hospital and stayed there for over a decade because he had what was described as ‘bizarre behaviors.’ Nobody believed Patrick could live in the community and he lost over a decade of his life because of this neglect.

         These stories document the voices of people who lost their freedom during the prime of their lives’.  

         Like June Adams from Denver, Colorado. June had two little boys when she had her stroke. She was put in a nursing home, where she was held captive for 17 years while her children grew up without her. 

These stories document the voices of older persons who were forced to leave their homes. 

         Like Betty Cranston from Lake Katrine, New York. When Betty’s COPD worsened and she needed a ventilator, she was forced into a specialized nursing facility hundreds of miles away from her son, home, and small town. Even though she did much of her own personal care at the facility and her son wanted his mother to return home to live with him, she was forced to stay there because she couldn’t get approved for community services or a portable ventilator. 

         I have included the individual stories we received at the end of this testimony. Their words are compelling.  Their voices rise up and ask for just one thing: freedom. 

Solutions: Real Choices

         It is clear that we need a new model. No longer should community based services be the exception to the institutional rule. 

         Community based services must become as easy to access as institutional services. 

         To accomplish this, the tie between the institution and funding must be cut.  Individuals must have real, meaningful and effective choices in what services they receive, where they receive services, and who provides those services. 

         Our nation must pass legislation which reforms the long term care system and incorporates the following principles:

• Attendant services must be available in the community, 24 hours per day, and seven days per week;

• Eligibility must be based on functional need, not on diagnosis, age, or funding stream;

• Incentives are offered to encourage states to allow assignment or delegation of care tasks previously restricted to only doctors and nurses;

• Consumer control must be maximized at every step of the process, including flexible payment and management systems; and

• Attendants must earn a livable wage and benefits. 

Immediate Actions

         This shift will take time, but there are immediate steps you can take to end the institutional bias. 

         First, you must pass Money Follows the Individual legislation. 

Under this legislation, the Federal government will fund community- based services for the first year for individuals who transition out of institutions! This legislation would provide a critical incentive to the states in providing Real Choices in long term care. This will encourage states to build their capacity to more effectively transition people back into the community. 

         Senator Harkin introduced the Money Follows the Person Act of 2003 (S.1394) on July 11th. Shortly after that, on July 25th, the White House distributed its own draft legislation: the New Freedom Initiative Medicaid Demonstration Act of 2003. We understand that you, Senator Grassley, are considering introducing legislation based on the administration’s proposal. This more comprehensive legislation would authorize a Money Follows the Individual Demonstration program and support other initiatives to promote community-based services. 

         Thousands of people with disabilities in nursing homes and other institutions will benefit if you fund these initiatives and give states the incentive to move people into the community. This first step, though not the complete answer to ending the institutional bias, will lay the foundation for the more comprehensive changes to the Medicaid system that must occur if nursing homes and other institutions are to become the alternative rather than the entitlement. 

         Whether you pass S. 1394 or the administration’s proposal, it is imperative that you take action now. This legislation must be passed during this session. The CMS data I spoke about earlier shows that at least 267,000 people with disabilities want to return to the community NOW!

         267,000 people are telling the nursing homes that they want to go home; 267,000 people are asking you to help them go home; and On behalf of those 267,000 people, I am pleading with you not to make them wait one more day! 

         There are other steps you could take to address the institutional bias. You could create an Enhanced Federal Medicaid Matching Rate for home and community based services. By paying a larger percentage of the cost of home and community based services, you will create a strong and on-going incentive for states to promote community living. 

         Such a step would help the states address their budget difficulties during these difficult times and promote community living options. It would also send a clear message that our nation values the freedom of all of its citizens, including those with disabilities. 

A Lasting Solution

         While demonstration programs and enhanced Medicaid matches would promote community living, they still leave much work to be done. The ultimate solution to ending the institutional bias, which has stolen the lives of so many thousands of seniors and people with disabilities, is clear. 

Pass MiCASSA!  

         The Medicaid Community Attendant Services and Supports Act (S. 971) gives people Real Choice in longterm care. MiCASSA provides individuals eligible for Nursing Facility Services or ICFs with the opportunity to choose Community-Based Attendant Services and Supports. 

         Rather than be forced into institutional placement, people would get assistance in their own homes. Such assistance would include the basic activities of daily life that most people take for granted like meal preparation, eating, toileting, bathing, grooming, shopping, managing finances, and participating in the community.  MiCASSA addresses the need for assistance with health related functions. MiCASSA implements other necessary reforms.  It would:

• provide assistance in the home and community, such as at school, work, or religious activities;

• include systems for securing back-up attendants;

• offer options for consumer control of services;

• address the inequity in financial eligibility between nursing facilities and community based services; and

• support essential, but minor expenses needed by people returning to the community, such as security deposits for housing, bedding, and kitchen supplies. 

         Because the money is following the individual, MiCASSA is not a new, unfunded mandate. We pay for this assistance already. MiCASSA makes the existing mandate more responsive to consumers. People who are already eligible for services will have a Real Choice. 

         Every major national disability organization supports MiCASSA. In fact, 92 national organizations are MiCASSA supporters. An additional 255 state or regional organizations also support the bill, as well as 306 local groups. I have included the full list at the end of my testimony. As you look through the list, you will notice that ADAPT is working with children’s advocates and senior advocates. Supporting organizations represent people with all types of disabilities: people with cognitive disabilities, people with sensory disabilities, people with mental health labels and people with physical disabilities.

We are asking that you take action now!

         We would not be here today had it not been for the heroic efforts of hundreds and hundreds of ADAPT members who have put their bodies on the line year after year. 

         On behalf of these people, I would like to thank you for this hearing.

         But on their behalf, I must point out that we need more than hearings. 

We need action. 

         Take the steps I have outlined today and pass these important pieces of legislation to FREE OUR PEOPLE!

         For an institution free America,

            ~Bruce E. Darling

 

Money Follows the Person

Available Right Now

         Finally the State Medicaid Directors Letter #04-005 on Money Follows the Person is out. It encourages states to use the Money Follows the Person (MFP) to help rebalance their long-term service and support system. CMS encourages states to move the money that is currently paying for a person’s nursing home services to pay for the home and community services for that same individual when he/she chooses to move into the community.

         Different from the proposed MFP legislation, this letter explains to states how they can do Money Follows the Person right NOW. It also addresses some of the misinformation regarding Money Follows the Person. This is a great opportunity to work with your state to give people Real Choice. It helps states implement the Olmstead decision, but more importantly it gives individuals in nursing homes who choose to leave, a way to have their community services funded.

         Has your state adopted a Money Follow the Person rebalancing policy?  If not, this is an opportunity to get that ball rolling.

 

Summary of Letter SMDL# 04-005 Released August 17, 2004

 

l “Money Follows the Person refers to a system of flexible financing for long-term services and supports that enables available funds to move with the individual to the most appropriate and preferred setting as the individual’s needs and preferences change.”

l Centers for Medicare & Medicaid Services (CMS) “committed to continuing to assist states in implementing the principles of MFP [Money Follows the Person] under existing authorities.”

l “A market-based approach that gives individuals more choice over the location and type of services they receive.”

l MFP can use self-direction as well as other service delivery options such as traditional agency and agency with choice.

l MFP strategies can use HCBS waivers as well as other community service options such as Home Health and the Personal Care Option.

l States may add participants to their HCBS waivers to implement MFP but must continue to demonstrate cost-neutrality in the overall program.

l CMS anticipates as individuals have greater choices in service delivery, fewer individuals will choose institutional care.

l CMS encourages states to reduce nursing facility beds to assist a state in rebalancing its long-term care service system, but this is not a requirement.

 

            The whole letter is on the CMS website: www.cms.hhs.gov/states/letters

 

Around the Nation

Congressman Davis

Holds Town Hall Meeting

on MiCASSA

By Larry Biondi

         Illinois Congressman Danny K. Davis, the Sponsor of the House MiCASSA bill, held a town hall meeting on May 27th in his district office on the Medicaid Attendant Services and Supports Act, MiCASSA - H.R. 2032. This legislation would change Long-Term Care system for people with disabilities and senior citizens giving them a real choice and easier transition from nursing homes into the community.

         Calling the town hall meeting “democracy at work,” Congressman Davis heard 3 hours of testimony from consumers about the need for a mandatory nationwide personal assistance program. Seventy-five consumers filled Congressman Davis’ second-floor room and half told their stories about the horrid conditions of living in nursing homes. One consumer recited a moving poem about the oppressiveness she endures daily. Another told a story about how she ended up in an institution but befriended a woman who lived in the same institution for 60 years. The testimony of their experiences and their friendship really sent a strong message about why MiCASSA - H.R. 2032 should be passed immediately!

         Different organizations supporting MiCASSA attended the town hall meeting, including Metro Seniors in Action and Local 880-SEIU. Special thanks goes to Access Living and Lake County CIL for bringing consumers to testify!

            At the end of he town hall meeting, the Congressman praised the disability community for diligently pushing for MiCASSA. 

 

Advocates Stage Nationwide Action to

Protest Cuts to Housing Funding

By Kevin Siek

         On May 26, 2004 fair housing advocates across America protested the recent cuts to the Section 8 Housing Choice Voucher Program. People representing DRACH, ADAPT, ACORN, Local Housing Authorities, Centers for Independent Living and numerous other fair housing organizations demonstrated in over half of the Department of Housing and Urban Development (HUD) Regions. In locations where people could not attend the demonstrations, people organized mass call-in, e-mail and fax campaigns to HUD and to their members of Congress.

         The Section 8 Program provides safe, affordable, integrated housing to more than two million American families. These vouchers are often the only resource available to low-income families facing our nation’s affordable housing crisis.

         When it became clear that Congress wouldn’t support the administration’s plan to block grant the Section 8 Housing Voucher Program, HUD used the back door method of issuing PIH 2004-7, an administrative memorandum that drastically cuts funding for the program with the following potential consequences during the May 26th protests:

 

l The number of Section 8 vouchers available to the very lowest income citizens will be cut.

l Rents will increase for tenants who are allowed to retain Section 8 vouchers.

l The number of homes available under the program will decrease as HUD refuses to honor funding commitments.

l Substandard Housing will increase!

 

         In response, fair housing advocates made the following demands:

 

l Rescind the April 22, 2004, PIH 2004-7 memorandum.

l Meet with National Housing Justice Memorial Day organizers, to establish a grassroots working consultant group to explore the impact of the PIH 2004-7 actions and block granting and other housing justice concerns.

l Prior to implementation of any changes to the Section 8 Program, develop impact statements from all Housing Authorities regarding the effect of proposed policies.

l Cease all attempts to block grant Section 8 funding.

 

         In Kansas City, Kansas over 70 demonstrators chanted and performed a street theater play in which Uncle Sam took away people’s vouchers and turned their homes into prisons and nursing facilities. Meanwhile a small contingent of negotiators met with the HUD Region VII staff inside.

         The regional director refused to sign a statement of commitment and ordered all the staff in Kansas City to do nothing! When asked to fax HUD Secretary Jackson the group’s list of demands directly, the director said NO to that too. Finally, a statement “memorializing” the regional director’s phone conversation with the Operations Specialist who acted as mediator, was negotiated.

 

         Over 150 people in Portland, Oregon demonstrated at the local HUD Office and had the demands faxed to the Seattle Regional Office.

 

         About 30 people presented the demands to the staff at the Region X Office in Boise, Idaho, but because the HUD Director was in DC they got no real answers to the demands. However, numerous individuals confirmed they had called their congressional delegates and HUD,and that all of Idaho’s Congressmen had signed on to HR 4263 that calls for fully funding Section 8.

 

         In Salt Lake City, Utah over 25 demonstrators protested outside the local housing authority. Dressed as Robin Hood and his merry men their message was, “HUD IS ROBIN HOOD IN REVERSE! ROBBING FROM THE POOR, GIVING TO THE RICH!”

 

         200 advocates in Denver, Colorado performed a street theatre skit as negotiators delivered the demands to the Region VIII Staff. Players representing President Bush and his Secret Service entourage ripped Section 8 vouchers from the hands of mothers with children, elderly and numerous disabled people. Each person was then assigned a new living situation: a cardboard box for mothers, elderly and homeless; all disabled people were handcuffed to the nursing home where the administrator counted his money with each new admission.

         The acting HUD director faxed the demands to the Secretary and came out to address the crowd. When a member of the audience attempted to ask questions they were told “ No Questions!” The crowd’s response to HUD, “No Answers”!

 

         The Chicago Chapter of DRACH, Progress CIL, Just Housing and the Chicago Coalition from the Homeless collaborated to bring about 50 people to the HUD Chicago Region V while other folks did a phone call and fax flood at noon. HUD staff that said they would forward the demands to the regional director, and to Secretary Jackson in DC, presented press releases to the group. Demonstrators chanted “HOMELAND SECURITY MEANS HAVING A HOME” and made it clear that HUD would be hearing from them about the regional director’s follow up.

 

         Thirty-five advocates demonstrated on the sidewalk outside the Region IV HUD in Atlanta, Georgia. Bernard Baker shared his own story of how he has been waiting for 10 years for a voucher. After finally getting to the top of the waiting list, it stalls out because of the changes HUD made.

 

         In Syracuse, New York HUD Staff refused to meet with over 25 demonstrators. The protesters refused to leave and continued to chant and picket with signs reading: “Prevent Homelessness! Affordable housing is not an option, it is a necessity! Keep 250,000 families in their homes!” Soon numerous members of the press arrived and although protesters were unable to meet with HUD representative they got excellent local media coverage.

 

         Over 500 demonstrators in Washington DC shut down the HUD office building until a representative for the Secretary met with them, heard their demands, and made a verbal agreement on behalf of Secretary Jackson to meet with representatives from the various regions. Capital Area ADAPTers also met with representatives of the local union (representing 1,000 HUD employees in DC) who overwhelmingly passed a resolution endorsing their demands.

            Advocates are waiting for Secretary Jackson to set up a meeting. Suffice it to say that fair housing advocates will not rest until their demands are met!

 

Anthem of the 10 Worst States

By Johnny Crescendo     (to the tune of Maggie’s Farm)

         DC

Ain’t gonna go to DC no more

Ain’t gonna go to DC no more

The lock you up and throw away the key

It could be you

It could be me

Don’t matter if you’re rich or your poor

Ain’t gonna go to DC no more

 

         FLORIDA

Ain’t gonna go to FLORIDA no more

Ain’t gonna go to FLORIDA no more

It ain’t no fun in the sunshine state

The sun don’t shine

In that dark place

Where they incarcerate you behind their doors

Ain’t gonna go to FLORIDA no more

 

         NEW JERSEY

When you get up

Is up to the nurse

When you go to bed is even fuckin worse

They drug you till you’re just lying on the floor

Ain’t gonna go to NEW JERSEY no more

 

         ALABAMA

There’s screaming in the hallway

The screaming never ends

You don’t know if it’s in your head

Or just one of your friends

But I know they’re not screaming out for more

Ain’t gonna go to ALABAMA no more

 

         GEORGIA

You’re pressing the bell but the nurse is on her break

You’re lying in you shit

And you think “for Jesus sake,

“Is there justice in this world anymore?”

Ain’t gonna go to GEORGIA no more

 

         ILLINOIS

You better have some money or the bastards let you die

They all play happy families

But it’s just a fuckin lie

As the future you saved goes out the door…

Ain’t gonna go to ILLINOIS no more

 

         TENNESSEE

You never want to stay in their heartbreak hotel

Nursing homes are worse

They’re even worse than hell

But it’s just what the Elvis state supports…

Ain’t gonna go to TENNESSEE no more

 

         LOUISIANA

Politicians dine out while we lie in their swamp

They can’t even pass the paper

To give us what we want

To live in the community, safe and sure…

Ain’t gonna go to LOUISIANA no more

 

         NEVADA

Nursing homes stink

It’s not even worth a bet

Lying in your piss is about as good as it gets

Wondering what your Governor’s paying for?

Ain’t gonna go to NEVADA no more

 

         MISSISSIPPI

Governor Haley Barbour eat in this fancy hotel

While our sisters and brothers

Are rotting in his hell

Dining on the profits from the poor…

Ain’t gonna go to MISSISSIPPI no more

 

Passages

Dusty Hogue

         Dusty Hogue of Michigan is gone. Another ADAPTer from the past has died. Dusty and Linda and other Michigan ADAPTers helped folks out of nursing homes and even fought off a hospital at one point.

         Dusty Hogue passed away on August 4. He will be missed.

 

Phil Borckus

         One of our fellow Kansas ADAPT members has passed away. Phil Borckus of Augusta, Kansas died suddenly this August. For those of you who were on the ADAPT March from Philly to DC, Phil was the guy who drove the follow-up van behind the marchers.

         We mourn the loss of a dedicated disability rights advocate, but celebrate his life, the good times we had with him and his efforts in the struggle to FREE OUR PEOPLE.

 

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