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Ahead of the Times
Volume 22, Number 9
June, 2002

MOORE SIGNS ON TO CO-SPONSOR MICASSA 
On May 1, U.S. Representative Dennis Moore signed on as a co-sponsor of H.R.3612, the Medicaid Community Attendant Services and Supports Act (MiCASSA). MiCASSA establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. 

Any individual who is entitled to nursing home or other institutional services will now have the choice where and how these services are provided. The two million Americans currently residing in nursing homes and other institutions would finally have a choice. 

U.S. Representative Jim Ryun is also a sponsor of the bill. Please contact Congressmen Moore and Ryun and thank them for co-sponsoring MiCASSA. 

Congressman Dennis Moore 
Cannon HOB 
US House of Representatives 
Washington, DC 20515
202/225-2865 
dennis.moore@mail.house.gov

Congressman Jim Ryun 
431 Cannon HOB
330 US House of Representatives 
Washington, DC 20515 
202/225-6601 
jim.ryun@mail.house.gov\ 

Also, please write U.S. Rep. Jerry Moran to ask him to sign on as a co-sponsor of HR 3612. He was a co-sponsor of a previous version of this bill, so there is a good chance he will respond to requests about the new version of MiCASSA. 

Congressman Jerry Moran 
Longworth HOB 
US House of Representatives 
Washington, DC 20515 
202/225-2715 
jerry.moran@mail.house.gov

VICTORY FOR VISITABILITY IN HOUSING
HB 2020, the Kansas Visitability Initiative, passed in the House on May 14, 2002 by a nearly unanimous vote! The bill was approved by the Senate on May 10 by a vote of 39 -1. HB 2020 is on its way to the Governor for his signature and on July 1the bill will become a state law. This is a major victory following a three year effort to pass this bill.

To summarize, HB 2020 requires that all newly constructed single family, duplex and triplex housing built with state financial assistance have the following features: (1) at least one accessible entrance; (2) accessible doors and doorways; (3) accessible routes within the dwelling; (4) reinforcements for later installation of grab bars; and (5) accessible light switches, electrical outlets and other controls.

Please write or call your State Representative and Senator to say thanks for voting for HB 2020! Special thanks to Representative Dan Thimesch, Representative Rick Rehorn, Senator Lana Oleen, Senator Anthony Hensley and many, many more.

ADAPT CALLS FOR ADMINISTRATION TO FOLLOW THROUGH ON PROMISES 
ADAPT, the national disability rights organization, took to the streets in the nation's capitol on May 12-16, demanding that President Bush and his administration follow through on the string of promises they have issued throughout the past year. A beginning to that follow-through would be strong presidential support of the passage of S.1298 and HR 3612, both known as MiCASSA, the Medicaid Community-based Services and Supports Act, designed to allow people real choice in where they receive their long term care. 

In February 2001, the President issued his New Freedom Initiative (NFI) in which he committed to "...tearing down the remaining barriers to equality that face Americans with disabilities today." Bush followed the NFI with an Executive Order in June, 2001, mandating swift implementation of the U.S. Supreme Court decision in Olmstead v. L.C. & E.W., and ordering cabinet members and agency heads to submit written Olmstead implementation plans outlining how they intend to remove existing barriers for persons with disabilities. 

"We've heard a lot of great talk and promises from Washington this past year, but a year later we have nothing to show for all those pretty words," said Linda Anthony, a Pennsylvania ADAPT Organizer. "Not only has the President not backed up any of his commitments with funding, but, adding insult to injury, he has actually recommended cuts in the very areas he highlighted as essential in the New Freedom Initiative. This is entirely unacceptable." 

The greatest barrier to equality for the disability and aging community is the public policy perpetuating the institutional bias in the Medicaid program. Removing that bias, which continues to force people with disabilities of all ages into institutional settings against their will in order to receive needed long term care services and supports, requires federal legislation like the House and Senate versions of MiCASSA. Once forced into nursing homes and other institutions, people typically languish until death, almost always at a much higher cost to the states than similar care in the community, according to data from the Center for Medicaid and Medicare Services. 

Once passed and enacted, MiCASSA will allow people to choose to receive long term care services in their own homes in the community instead of being forced into institutional settings. 

"Getting MiCASSA passed as part of the President's New Freedom Initiative is the best way we know to begin to remove barriers to equality for persons with disabilities," said Bruce Darling, ADAPT Organizer from Rochester, New York. "Once we are in our own homes in the community, free of institutional warehousing, we are committed to partnering with the Bush Administration to remove the remaining barriers. Anyone can talk, but honorable people back that talk with action, and that's what we're demanding from the President." 

For information contact: Bob Kafka 512/ 431-4085 cell Marsha Katz 405/544-9504 cell You can view updates on ADAPT's activities at http://www.tilrc.org/docs/0502wdc.htm.

SRS REGULATION WILL HURT PEOPLE WITH LIFE THREATENING ILLNESSES 
-- Act Now to stop it
SRS is going forward with a new policy that will force people with life threatening illnesses to choose between Home and Community Based Services and the Hospice Medicaid Benefit. After July 1, 2002, consumers receiving Medicaid State Plan hospice services will not be eligible to receive services under the PD Waiver. What this really means is that people with life threatening illnesses will have to choose between effective palliative care-good pain control at home and personal care attendant services. (Please note, that if a person has both Medicare and Medicaid, they may be eligible for Hospice Medicare Benefits and also the HCBS-PD Waiver. This policy would affect people with Medicaid only).

Hospice staff are the experts on good pain control. People with life threatening illness can be much more comfortable with hospice assistance. Many medical doctors, even specialists in cancer and other life threatening illnesses, are not as good at pain management as hospice. This helps people extend the quality of life. Regular home nursing visits replace the frequent, painful medical trips, which would be required without hospice care. Hospice also offers a spiritual advisor, social work services, and grief counseling, along with respite volunteers and very limited home health aide hours in the home. 

However, hospice services cannot provide the number of hours of personal attendant care for shopping, laundry, housework, etc. that the Physical Disabilities Waiver can provide. Hospice also cannot provide night support either. 

It is very unfair for Medicaid consumers with life threatening illnesses to have to choose between these services. This especially hurts people who live alone or do not have a lot of family and friends nearby to help out. It basically forces people who live alone and have a life threatening illness into a nursing home with pain management or they can stay at home without good pain management. It is an unfair choice. If you agree, please write SRS and let them know. Here's how:

• Write to:
  Laura Howard, Assistant Secretary of SRS
  Docking State Office Building, 6th Floor
  915 SW Harrison Street
  Topeka, Kansas 66612 

Important points to mention in your letter:

• You oppose Policy B 2002-034, which states that consumers receiving Medicaid State Plan hospice services will not be eligible to receive services under the HCBS-PD Waiver.
• Hospice and HCBS services are not duplicate services. They provide very different services.
• Medicaid consumers with life threatening illness should NOT have to choose between Home and Community Based (Waiver) Services-and good pain control management. This is unfair.

Please write as soon as possible. We CAN change this unfair policy!!!

PEER SUPPORT GROUP FISHING/COOKOUT EVENT
Peer Support Group is having a Fishing and Cookout event Saturday, June 1, 11:30 a.m. - 3:30 p.m. at Clinton Lake. We will be loaded on the buses and ready to go at 11:30 a.m. sharp, so don't be late. Remember to bring a jacket in case it gets cool or sunscreen if you burn easily. Hot dogs, chips, etc. will be provided. If you have qestions, call Ranita, Tim or Kendall at 841-0333.

QUILTING/ ARTS AND CRAFTS GROUP
The Quilting/Arts& Crafts group will meet on Monday, June 3 and 17, 1 - 3 p.m. in the large conference room at Independence, Inc. Ms. Wanda will demonstrate how to make wonderful gift ideas for Father's Day. If you have questions, please call Ranita at 841-0333.

COOKING CLUB
Cooking Club will meet on Monday, June 10 from 4:30-6:30 p.m. Ms. Nola will be our guest Chef. If you have any questions, please call Ranita at 841-0333.

MUSIC SUPPORT GROUP
The next meeting of the music support group will be Friday, June 28, 4:30 - 6:30 p.m. at Independence, Inc. If you would like more information contact Tim Cross at 841-0333.

INFORMATION ON TRUSTS
Are you interested in knowing more about trusts? Are you a consumer with a trust who would like to explore a less expensive option? Are you a parent considering establishing a trust on behalf of your child?
If you would like answers to these questions and more, come and hear Barbara Helm speak on Monday, June 17, 10 a.m. at Independence, Inc. Ms. Helm is Executive Director of ARCare, a not-for-profit organization that provides advocacy and guardianship programs for children and adults with disabilities. Ms. Helm will discuss Special Needs Trust and Medicaid Eligibility. Parents, consumers and professionals are invited to attend.

For more information or to request an accommodation for the presentation, contact Susan Mikesic at 841-0333 or toll-free at 1-888-824-7277. If you would like more information about ARCare, visit their website at www.arcare.org, or you may e-mail Ms. Helm at arcare@crn.org. 

Please remember that Independence, Inc. is a scent-free zone, and refrain from wearing perfumes and other scented products when visiting our center. Thank you.

ACCESS TASK FORCE 
The next meeting of the Access Task Force will be Friday, June 7, 1:30 p.m. at Independence, Inc. For more information call 841-0333.

WANTED: Electric box or oscillating fans that are broken or that you no longer want. Any brand and size accepted. If necessary, unwanted fans can be picked up. Contact Michael at 785/840-9861, 9 a.m. - 5 p.m., Monday - Saturday.

FOR SALE: Three-wheel Rascal scooter by Electric Mobility. Built in charger. Older but runs well. $925. Leave a message and I will return your call, 913/599-6639.

FOR SALE: Pride Jazzy 1120 power wheelchair (blue), large size. Comes with two 12 volt batteries with built-in charger. Less than one year old. Asking $1,000. For more information call 785/597-5327 9 a.m. - 3 p.m.

BORED AND BROKE
Here are some of the free events going on around Lawrence in June and throughout the summer!

• REMEMBERING GREECE
  Cecilia Smith painted these watercolors following her March 2001 trip to Greece. June 1 - 30 at Lawrence Public Library, 7th and Vermont during regular library hours, 785/843-3833. http://www.lawrence.lib.ks.us 
• PHOTOGRAPHY BY ANDY ALLISON
  These photographs focus on Kansas clouds and flowers. June 1 - 30 at Lawrence Public Library entrances and media room.
• GEOMETRIC ABSTRACTIONS: QUILTS 1870 to 1990
  Quilts from the collection are shown, complement the ongoing exhibition "Amish Quilts 1880 to 1940 from the Collection of Faith and Stephen Brown." Spencer Museum of Art, KU campus, 1301 Mississippi. June 1 - August 18, Tues., Wed., Fri. and Sat. 10 a.m. - 5 p.m.; Thurs. 10 a.m. - 9 p.m.; Sun noon - 5 p.m., 785/864-4710. http://www.ukans.edu/~sma
• WEDNESDAY NIGHT BAND CONCERTS
  Bring your lawn chairs or blankets and join the Lawrence City Band for a free concert in South Park, 11th and Massachusetts, 8 p.m. 785/832-7930.
• BROWN BAG CONCERTS
  Bring your lunch and enjoy a different group each Thursday June 6 - August 8, noon at 9th and Massachusetts. Rain site is Watkins Museum, 11th & Massachusetts in downtown Lawrence. 785/832-7940.
• FOLK MUSIC CONCERT BY MARIA ANTHONY
  Well-known in the Lawrence area, Maria Anthony will return for her second library concert on June 9 in the Lawrence Public Library Auditorium, 2:30 - 3:15 p.m., 843-3833.
• 20TH ANNUAL ST. JOHN'S MEXICAN FIESTA
  Authentic Mexican food, live entertainment, games and so much more. June 22 at St. John's Church, 1204 Kentucky, 5 p.m. - midnight, 785/842-5602.
• SRS TO HOST COMMUNITY MEETINGS
  Kansas Social and Rehabilitation Services (SRS) will hold a series of public meetings throughout the state in June and July, to review current and upcoming social service policy and program changes resulting from decisions made by the Kansas Legislature. It will be explained how those changes will affect SRS and people who receive services from SRS. The meetings will also address how community partners can work together to meet the social service needs in their communities, and to gather information needed to plan for the future as SRS prepares its FY 2004 budget.
  
  The Local Stakeholders Meeting #1, Communicating Legislative Policy Decisions, will take place in the Lawrence SRS Office, 1901 Delaware, Lawrence, Kansas, on June 10, 10 a.m. until noon.
  
  The Local Stakeholders Meeting #2, Planning for the Future, FY 04 Budget Planning, will take place on July 11, 10 a.m. - noon at the Lawrence SRS office at 1901 Delaware. The local SRS contact for these meetings is Arthurine Criswell 785/832-3768.
• COMPUTER LEARNING CENTER FREQUENTLY ASKED QUESTIONS
  This will be the first in a series of Independence, Inc. Frequently Asked Questions columns. These FAQs will also be added to our website as they are published. 
  
  If you have any questions that you would like to see included in any of our agency FAQs, please contact Tony Peterson at 841-0333 or tonyp@independenceinc.org and he will pass the information on to the appropriate person.
  
  Q. I have a friend with Carpel Tunnel Syndrome that has left his hands almost useless. Is there any way he could learn to use the computer?
  A. Yes! We work with individuals with any kind of disability to determine what type of assistive technology they will need to use a computer, and will teach them how to use that technology as well as how to use the computer itself.
  
  Q. Does Independence, Inc. do brailling?
  A. The CLC does Braille projects for individuals or businesses for a small fee. 
  
  Q. Can I use the CLC computers for my own projects? 
  A. CLC provides open lab times as follows: 

Tuesday - Friday 11:30 - 2:30 3:30 - 5:00
Wednesday 11:30 - 2:30 3:30 - 7:30

In addition, we have two computers in the Library that may be used at any time during agency business hours. The Library is located on the first floor behind the reception desk.

Q. I heard you give away free computers. Tell me more about this program.
A. The good news - We occasionally give away used computers to people in Douglas, Franklin and Jefferson counties that have been donated to us. The bad news - The computers are older machines as that is what is donated. We have no laptops. We do not give away printers or computer tables. The computers work when we give them away. However, we do not guarantee them at all nor do we come to your home to set them up or repair them. There currently is a very long waiting list with people who have been on it since 2000. Good news again - We're working on ways of coming up with better, newer computers and getting them out to people sooner. If you'd like to get on that long waiting list, give us a call. 

Q. I'm having problems with my computer. Can you help me?
A. We will try to help over the phone. In some instances we might ask you to bring in the computer so we can take a look at it. We do not make house calls for computer repair, however.

Q. How much does it cost to take one of your classes? 
A. All of our classes, including the vocational ones, are free.

Q. Are you open nights and weekends?
A. We are open Wednesday nights until 7:30. Other than that, we have no night or weekend hours at this time.

Q. Can I use CLC when classes are in session if I'm very quiet?
A. Sorry, no. The Lab is closed when a class is in session. However, you can use the computers in the Library.

Q. I don't like classes. Do you teach the same things one-on-one?
A. Yes and no. Due to the large number of students we have, we do not have the resources to teach our classes one-or-one, particularly our vocational courses. However, we provide opportunities for Independent Study of many of our classes where you may work on your own with the same materials as do the students. An instructor will provide you with additional assistance as needed and as time allows. 

Q. Does it matter what type of disability I have?
A. No.

Q. If I have trouble learning everything in a class, can I take the class again?
A. Absolutely. You can enroll as many times as you want. In addition, you can ask for extra assistance from any of the CLC staff. We want to see you succeed.

Q. Do I have to live in Lawrence to use your services?
A. Not at all. 

Q. Do you teach classes anywhere else but in Lawrence?
A. Not at the moment. But we are working hard on changing this.

Q. Are there any age requirements to use your services?
A. No.

Q. I'm trying to learn to use Dragon Naturally Speaking and am having great difficulty. I know you don't make house calls for computer repairs, but I can't get to Lawrence to get training there. Can you help?
A. Yes. We don't make house calls as a "computer repair service" but we do help people with computer issues like this. (Give us a call to see if we can help you over the phone first. Sometimes a few tips and tricks can make all the difference.) 

LOW INTEREST LOANS AVAILABLE FOR KANSANS WITH DISABILITIES
The Kansas Assistive Technology Cooperative (KATCO) has announced a low interest Alternative Finance Program. Kansans with disabilities and their families are eligible for the low interest loans to purchase assistive technology equipment and services.

The program supports accessible, on-line banking through statewide financial partners. Individuals with disabilities and families with children who have disabilities receive financial counseling and review their options before incurring a debt.

An emphasis is placed on helping individuals to improve their credit rating and to determine their ability to repay loans. Many applicants who would be considered poor credit risks by traditional standards receive counseling to increase their prospects for qualifying for the loan and guidance in budgeting for payments.
Low interest loans are available in amounts from $500 to $50,000. Computers, adaptive vehicles and scooters are common items financed with the loans, but any assistive technology device, from home modifications to hearing aids, may qualify. The KATCO Loan Program is highly individualized and people of all income levels and credit histories are considered.

Those interested in applying for loans or in obtaining more information about the services and programs, should contact the regional Assistive Technology Access Site by calling 1-800-KAN DO IT (1-800-526-3648).

BOARD MEMBER PROFILE
Dot Nary joined the Independence, Inc. Board of Directors in 2000 and has served since October, 2001 as President. She currently works at the K.U. Research and Training Center on Independent Living as Project Coordinator.

She received her Master's degree from the Department of Human Development and Family Life at K.U. and is currently a Doctoral student in the same department. Before moving to Lawrence she worked as an Independent Living/Outreach Specialist in Syracuse, New York. 

She became involved with Independence, Inc. because she believes that independent living centers make a great contribution to their communities and wants to support the work the agency does for people with disabilities and for the rest of the community. 

GARDENING MADE EASIER
If you enjoy gardening but find that traditional methods are too difficult, alternative methods are available. Two resources are listed below:

Accessible Gardening for People with Disabilities by Janeen R. Adil, $16.95 plus $4.50 shipping and Handling, 300 pages. Available from Woodbine House, 800-843-7323, www.woodbinehouse.com 

The Enabling Garden by Gene Rothert, $13.95, 160 pages. Available from Taylor Trade Publishing, www.amazon.com

SRS PUBLIC FORUM
Rehabilitation Services and the State Rehabilitation Council intive you to participate in a Public Forum Thursday, June 6, 7 - 9 p.m. at the SRS Area Office, 1710 Palace Drive in Garden City. 

If you are unable to attend but wish to participate, you may send your written comments to Peg Spencer, Rehabilitation Service, White Lakes Center, Suite 150, 3640 SW Topeka, Blvd., Topeka, KS 66611 or mas@srskans.org In particular they would like to know:

• In thinking about your experience with Rehabilitation Services and vocational 
  rehabilitation, what has worked well for you?
• What has not worked well for you?
• How can we improve?

Other Public Forums will be held September 5 in Pittsburg, and December 5 in Manhattan.