PLUK eNews Summer 2004

We are proud to present news of interest for Montana families of children with disabilities and special health care needs, and for the professionals and educators who serve them; however, it does not constitute an endorsement.

Highlights:

Summer MU available online
The PLUK Summer 2004 issue of MU is available online at http://www.pluk.org/MU/MU_Sum04.pdf. The paper version should be in the mail within one week.

Free tickets for families, August 7, Billings
The Vigilante Theater from Bozeman, sponsored by the Yellowstone County Deputies Association, will present a brand new comedy, "Neon Dreams", on August 7th, at 7pm, at Lincoln Center. Contact Sheryl at the PLUK office, 255-0540.

Autism & Asperger Support Groups in Billings
**Spectrum Disorders (Autism, Aspergers, ADD, ADHD) Jaime and Nicholas Moran 256-8007, located in Billings Heights. Call for meeting times.
**Aspergers Disorder - Cheryl & Vern Bass 245-8338, located at the 17th Street Station. Call for meeting times.

Rewrite of Special Education Law Stalls in Congress
By Erik W. Robelen, July 14, 2004
With each day that passes, the chances that Congress will deliver a bill rewriting the nation's main special education law to President Bush's desk this year appear to be fading.
Analysts and education lobbyists are growing doubtful that, even with all of the work lawmakers have invested in the reauthorization of the Individuals with Disabilities Education Act, the final hurdles can be overcome. They point mainly to partisan tensions in Congress inflamed by the upcoming elections as the reason.
"They're just absolutely stuck right now," said Kim Anderson, a lobbyist for the National Education Association. "It should be able to move, but I don't think it's going to happen before Election Day."
Read the complete article at: http://www.edweek.org/ew/ewstory.cfm?slug=42IDEA.h23 (will require free registration).

RURAL HOUSING REPAIR LOANS AND GRANTS
The Rural Housing Service (part of the U.S. Department of Agriculture) offers up to $7,500 to make dwellings accessible for household members with disabilities in rural areas. To find out how to apply call 202-720-4323 or go to
http://www.rurdev.usda.gov/rhs/sfh/brief_repairgrant.htm.

New Decision from U. S. Court of Appeals - Parental Nightmare Ends
In Missouri Department of Education v. Springfield R-12 School District, the U. S. Court of Appeals issued a strong decision on behalf of Katherine Lewis, a severely disabled deaf-blind child:
"The facts of this case describe a parental nightmare - Katherine's parents watched as the scholastic needs of their child were processed through the grinding machinery of state and local education bureaucracies."
In a long-running saga of bureaucratic indifference, the state department of education repeatedly passed the buck for Katherine's education, then denied that they were responsible for educating Katherine, a child with severe disabilities. In their decision, the Court wrote:
"No Missouri educational agency wanted to take responsibility for educating this child, and all of them were attempting to 'pass the buck,' both figuratively and literally. Missouri statutes make clear that given the facts of the instant case, the 'buck' stops with the Missouri Department of Elementary and Secondary Education.
For more information, go to: http://www.wrightslaw.com/law/caselaw/04/8th.modoe.springfield.lewis.htm

FAMILY OPPORTUNITY ACT (FOA) AND MONEY FOLLOWS THE PERSON (MFP) LEGISLATION STALLED
After almost two weeks of intense negotiation, the Family Opportunity Act and Money Follows the Person legislation has stalled in the House of Representatives. House Energy and Commerce Committee Chair Joe Barton (R-TX) and House sponsor Rep. Pete Sessions (R-TX) proposed language to the bill that would offset the cost of FOA/MFP by making Medicaid "targeted case management" (TCM) services payable as an administrative expense. TCM service is currently considered a "service," meaning that states with higher Medicaid matching rates get more than half of the cost for the service from the federal government. But hopes for quick passage of this legislation faded last week as Congressional leaders were unable to find offsets rather than the TCM which several Congress people and other organizations opposed. The bill, originally on the suspension calendar for Monday, June 14, was postponed after Rep. Henry Waxman (D-CA), the bill's lead co-sponsor, said that more time was needed to examine the changes to the bill. Also, the Children's Defense Fund, a key back of the FOA legislation, withdrew its support of the House measure because of the offset provision. A number of disability organizations, including NCIL, also expressed concerns about the offset.
In the final week before Congress broke for a recess, the legislation never again was placed on the suspension calendar. However, NCIL remains committed to pushing for the passage of this legislation. MFP has been a top priority for our organization since President Bush made his promise to enact Money Follows the Person as part of his New Freedom Initiative over a year ago. While we very much appreciate the efforts of the Administration, the Center for Medicaid/Medicare Services, the Congress people and their staffs in the attempt to pass this recent legislation, we will not rest until Money Follows the Person becomes a reality! We feel good about being included in the process and the discussions these past two weeks, and we hope that this will continue in the future. Our position is explained in the following statements of principle.
1) We remain strongly committed to MFP as a top priority in this Congress and will continue to seek mechanisms for passage.
2) We support the linkage of MFP with FOA and will strongly oppose any de-linking of the two. Medicaid enhancements should not take place unless they are being accompanied by progress on the basic civil rights front since MFP is a policy acknowledgement of basic "Olmstead" rights.
3) We understand that the "pay-fors" remain the problem with this bill. NCIL respects the presence of this problem but remains committed to seeking out a payment mechanism that will result in passage of MFP and that is fair and equitable to all concerned. In the current political climate, there may very well have to be a "cost" to moving ahead with Medicaid policy improvements. NCIL believes that MFP represents a substantial improvement in Medicaid and is worth a cost, a "pay-for" as long as the "pay-for" is fair and evenly spread around the country. WE WANT MFP TO PASS DURING THIS CONGRESS!
Based on this position, NCIL urges its members to continue to advocate with your Congressional representatives and senators and with the White House and CMS. While Congress is in recess this week and part of next, schedule meetings and send e-mails and faxes to them encouraging them to pass the Family Opportunity Act and Money Follows the Person! Also, send faxes, e-mails and calls to the White House urging President Bush to follow through with his promise under the New Freedom Initiative for Money Follows the Person. Call, fax or e-mail Dr. Mark McClellan and Dennis Smith at the Center for Medicaid/Medicare Services and advocate for them to find the means necessary for this legislation to pass.

Five Years After Key Decision, Bazelon Center Blasts Slow Movement of People with Mental Illnesses Into the Community, Lack of Services
WASHINGTON, DC (June 21, 2004)-Five years ago tomorrow, the Supreme Court issued its historic Olmstead decision, affirming that, under the Americans with Disabilities Act (ADA), people with disabilities should be served in the most integrated setting possible-their communities. The following is a prepared statement by Ira Burnim, legal director at the Bazelon Center for Mental Health Law, on the anniversary of the ruling:
"While many Americans with disabilities have made progress since the Olmstead ruling, people with mental illnesses have been largely left behind in efforts to implement the decision. Most states are enacting Olmstead reforms at a snail's pace, defying the spirit of the ruling and preventing Americans with mental illnesses from participating in their communities.
"Rhetoric has far outstripped action to promote community services for people with mental illnesses. States are quick to trumpet their limited efforts to implement Olmstead, but these have produced little actual movement of people with mental illnesses into integrated community settings.
"Budget pressures have closed psychiatric hospitals across the country, but few appropriate community services have been adequately funded to help people with mental illnesses live successfully in the community. Instead, states have 'transinstitutionalized' people with mental illnesses to settings as outmoded, isolating and inappropriate as the facilities they were meant to replace. Increasing numbers of people with psychiatric disabilities now find themselves in large board and care homes, 'adult homes,' nursing homes, and other institution-like settings. Thousands wind up in jail or prison because chronically underfunded community mental health systems fail to provide meaningful support.
"Where real progress has occurred, it is largely because states have been sued. Five years after Olmstead and 14 years after enactment of the Americans with Disabilities Act, litigation should be unnecessary. Yet it remains the single most effective way to combat the persistent segregation of people with mental illnesses.
"It's past time for Olmstead implementation to move out of the courtroom and into America's communities."
Read more at: http://www.bazelon.org/newsroom/6-21-04olmstead.htm

2003 National Health Interview Survey Released
Findings released this week from the 2003 National Health Interview Survey showed that more children than ever had health insurance. The percentage of children without health insurance coverage dropped from 13.9 percent in 1997 to 10.1 percent in 2003, the highest rate of health insurance coverage for children ever measured by CDC's National Center for Health Statistics. The improvement reflects an increase in public coverage for poor and near-poor children, including through the State Children's Health Insurance Program (SCHIP).
The survey also found, however, that the number of uninsured working-age adults increased. Moreover, lack of health insurance also continues to disproportionately affect minorities. In 2003, about 1 in 3 (33 percent) Hispanics lacked health insurance, as opposed to 17.4 percent of the non-Hispanic black population and 11 percent of the non-Hispanic white population. The full report is available at http://www.cdc.gov/nchs/Default.htm

Medical Debt a Problem for Almost 20 Million American Families
Medical Debt a Problem for Almost 20 Million American Families Almost 20 million American families had problems paying medical bills in 2003, forcing many to make tough trade-offs between medical, food and housing expenses, according to a national study by HSC. Center for Studying Health Systems Change, Issue Brief No. 85 See:
http://www.hschange.org/CONTENT/689/ also see http://www.hschange.org/CONTENT/690/

VisuAide unveils Maestro: the first mainstream handheld PC for blind and visually impaired
http://www.visuaide.com/news_maestro_en.html
Atlanta, Georgia, June 30, 2004 -- VisuAide unveiled today Maestro, the first mainstream handheld PC accessible to the blind and visually impaired. The launch coincided with the National Federation of the Blind convention held in Atlanta this week.
Maestro is an HP iPAQ Pocket PC made accessible by VisuAide using text-to-speech technology and a tactile keyboard membrane over the PDA touch screen. Now, the visually impaired can enjoy the ultra-compact size of a real PDA and essential information-access functionality: text and vocal note taking, agenda, contact directory, etc. The visually impaired can benefit from the same applications than sighted users without handling a stylus.
Maestro takes advantage of wireless communication networks such as Bluetooth to yield a modular system that can be operated with or without an external keyboard (Braille or standard), depending on user preference and the task at hand. For example, Maestro allows Braille input using either the tactile keyboard on the unit for brief notes, or an external Braille keyboard for extensive note taking.
With its open environment, the system readily integrates third-party or other VisuAide applications, such as Trekker, a GPS orientation system, and Victor Reader, a digital talking-book player.
As a mass-market product, Maestro can evolve in price, power and connectivity at the same rate as electronics for the sighted. Users can benefit from the latest innovations in the PDA market much earlier and at a lower price.
To begin shipping in September 2004, Maestro is the most affordable and compact personal information-management and communication system available to the visually impaired. "VisuAide's objective was to provide users with a low-cost, highly portable mobile-computing solution," said Gilles Pepin, president of VisuAide. "VisuAide hopes to make technological aids available to a larger number of blind and visually impaired individuals."
http://www.visuaide.com/news_maestro_en.html

Resources for Families on Positive Behavioral Supports and Interventions
http://pbis.org/english/Family_support.htm
The Technical Assistance Center on Positive Behavioral Interventions and Supports (PBIS) has been established by the Office of Special Education Programs, US Department of Education to provide information and assistance to schools and families for identifying, adapting, and sustaining effective school-wide disciplinary practices.
In the Family Support section, Laura Riffel and Ann Turnbull have written two booklets that coordinate collaboration between parents and educators on writing an IEP that has PBS components. These books can be downloaded from this site. Follow the instructions to put the booklets together. They are meant to be staggered pages so you can easily flip to the section that you need.

2004 N.O.D./Harris Survey Documents Trends Impacting 54 Million Americans
WASHINGTON, D.C. JUNE 24, 2004 - Americans with disabilities are at a critical disadvantage compared to other Americans in ten key areas of life, according to the 2004 National Organization on Disability/Harris Survey of Americans with Disabilities, released in Washington today. Continuing a trend, the survey found slow and modest progress in the indicators, which Harris has tracked since 1986.
Harris Poll Chairman Humphrey Taylor, who directed related surveys in 1986, 1994, 1998 and 2000, highlighted statistics:

"Progress is too slow, and the gaps are still too large," said National Organization on Disability President Alan A. Reich. "Looking back four years, or ten years, to our earlier N.O.D./Harris surveys, we see Americans with disabilities heading in the right direction. But people with disabilities remain pervasively disadvantaged. Our goal of full participation is a dream deferred. I hope that the findings we are releasing today will inspire legislators, public officials, and the American people to rededicate themselves to this goal. A fifth of Americans have disabilities; everyone knows people with disabilities; and anyone can acquire a disability at any time. Everyone has a stake in these findings."

In addition to the primary findings, Mr. Taylor reported several others of note:

Preparing for College: An Online Tutorial
by Sheryl Burgstahler, Ph. D., University of Washington
Transition from high school to college is a big step for everyone. Students with disabilities have even more things to consider than their nondisabled peers.
College-bound youth should begin preparing for postsecondary education and beyond while they are still in high school by selecting appropriate classes and earning good grades. In addition, they can begin to prepare for and to explore college options online. This publication shares a few Internet resources for college-bound teens with disabilities. If you use the online version at http://www.washington.edu/doit/Brochures/Academics/cprep.html you can simply click on each website address rather than type it in.
To be cautious, parents and teachers should always check out websites before recommending them to a child. Keep in mind that the content of a website may change over time, so a site that was once a great resource for a teenager may no longer be appropriate. Parents and teachers should also consider exploring websites with a child, side-by-side. As always, if you find sites that are inaccessible to you or someone else who has a disability (for example, they include video clips without captioning for individuals who are deaf), do something about it. Send electronic mail to the website sponsors requesting that they make their pages accessible to everyone. These situations provide opportunities for young people to practice skills in self-advocacy, as well as advocacy for others.

UPDATED TIPS FOR AIR TRAVELERS WITH DISABILITIES
The Transportation Security Administration (TSA), a division within the Department of Homeland Security responsible for protecting the nation's transit system, has posted updated guidance for air travelers, including those with disabilities, on security screening procedures. This information explains the rights of passengers with disabilities and details necessary screening procedures. Guidance is provided concerning different types of disabilities and assistive devices. These tips are posted on TSA's website at http://www.tsa.gov/public/display?theme=156

AOL debuts service for disabled
By Dinesh C. Sharma, CNET News.com, July 8, 2004, 12:10 PM PT
America Online announced an instant messenger relay service for users who are hard of hearing or speech disabled.
AIM Relay Service will let hearing- and speech-disabled users place relay telephone calls using their AOL Buddy List or AIM Buddy List feature, the company said. The service can be accessed from any PC or device running AOL services and will be free for AOL members and Apple Computer's iChat users.
Relay services facilitate telephone communication for people who are deaf, hard of hearing or speech disabled. Usually, hearing- or speech-impaired people use a teletypewriter or TTY devices to connect with a relay communications assistant, who places the call and relays the conversations between two parties. The assistant reads the caller's text to the recipient and types the recipient's voiced response back.
Read the complete article at: http://zdnet.com.com/2100-1104_2-5261503.html?tag=zdfd.newsfeed

Doing Your Homework: Alternatives to Name-Calling & Other Behavior We Will Regret
by Suzanne Heath, Research Editor, Wrightslaw
Murphy's Law: Parent Version
Law # 1 - The only tape recording the school will never misplace is the one of you being sarcastic at an IEP meeting.
Law #2 - If you lose your mind and call someone a name during an IEP meeting, that person will be connected to your child, in some way, for the next 1,000 IEP meetings.

Behaving Well: Alternatives to Name-Calling
Children need parents to have the necessary skills to behave well in frustrating situations. They cannot afford their parents to lose tempers or waste time learning on the job.
You need to anticipate that you will be caught off guard during meetings. When you are upset, you need to have skills and strategies in place that you can rely upon.
These articles describe some alternatives to name-calling and other behaviors you will regret.

Crisis Management, Step-By Step - Virtually nothing from the school requires an immediate response from you. Avoid taking action when you are angry, frustrated or feeling threatened. http://www.fetaweb.com/02/crisis.manage.htm
Assertiveness and Effective Parent Advocacy - Being assertive is not the same as auditioning for the "Bombastic Hall of Fame." In this short article, parent advocate Marie Sherrett describes the joys and challenges of parent advocacy. http://www.fetaweb.com/01/assert.sherrett.htm
Reasonable Expectations, Power Struggles, and Perspectives - As advocate Pat Howey says, "There is nothing wrong with disagreement. Problems come from the manner in which disagreements are handled. I have learned that there are better ways to obtain positive results than to roar through meetings in a Mack Truck." http://www.wrightslaw.com/advoc/tips/howey_advice.htm
Mistakes Parents Make - Because the stakes are so high, it is difficult for parents of children with special educational needs to advocate calmly and objectively for the educational and related services their children need. Parent attorney Bob Crabtree describes some common mistakes that undermine parents' ability to obtain appropriate services. http://www.fetaweb.com/02/mistakes.parents.crabtree.htm

Learning About School Districts, School Teams, Gatekeepers
Your emotions will be easier to manage when you learn about school districts, school teams, and the mission of public schools. http://www.fetaweb.com/02/about.schools.htm
When you advocate for your child, you are likely to meet Gatekeepers. The Gatekeeper's job is to say, "No!" Read 10 Reasons Why Schools Say No. http://www.fetaweb.com/02/10_reasons.no.htm
What do you do when you meet a Gatekeeper? Do you accept "No"? Read Gatekeepers: Their Job is to Say No. http://www.fetaweb.com/02/gatekeepers.htm

VSA Offers Young Soloists Awards for Performing Artists With Disabilities
VSA arts ( http://www.vsarts.org/ ) is an international nonprofit organization working to help create a society where people with disabilities can learn through, participate in, and enjoy the arts.
The VSA arts Young Soloists Award annually recognizes outstanding young musicians with disabilities, ages 25 and under, who have exhibited exceptional talents as vocalists or instrumentalists. Each year, a committee of music professionals selects four award recipients to receive scholarship funds and the opportunity to perform at the John F. Kennedy Center for the Performing Arts in Washington, D.C. All types of music are encouraged. Go to VSA arts' website for further information http://www.vsarts.org/programs/ysp/

Children Served Under IDEA, Part B in Montana
Ages 3-21 by State, 1976-77 Through 2001-02

State Year	Students Served	Total Enrollment	Prevalence Rate
MONTANA 1976-77 MONTANA 1977-78 MONTANA 1978-79 MONTANA 1979-80 MONTANA 1980-81 MONTANA 1981-82 MONTANA 1982-83 MONTANA 1983-84 MONTANA 1984-85 MONTANA 1985-86 MONTANA 1986-87 MONTANA 1987-88 MONTANA 1988-89 MONTANA 1989-90 MONTANA 1990-91 MONTANA 1991-92 MONTANA 1992-93 MONTANA 1993-94 MONTANA 1994-95 MONTANA 1995-96 MONTANA 1996-97 MONTANA 1997-98 MONTANA 1998-99 MONTANA 1999-2000 MONTANA 2000-01 MONTANA 2001-02	8,610 10,444 12,549 12,781 13,424 14,279 15,215 15,480 15,930 15,376 15,369 15,154 15,615 16,250 16,955 17,741 18,395 17,999 17,679 18,364 18,600 18,735 18,797 19,039 19,313 19,262	170,552 168,732 164,326 158,208 155,193 153,435 151,000 153,646 154,000 155,000 153,330 152,207 151,944 150,593 151,670 153,075 158,031 162,891 164,295 165,499 166,909 163,999 161,023 157,236 155,860 151,947	5.05 6.19 7.64 8.08 8.65 9.31 10.08 10.08 10.34 9.92 10.02 9.96 10.28 10.79 11.18 11.59 11.64 11.05 10.76 11.10 11.14 11.42 11.67 12.11 12.39 12.68

Accommodating Students with Disabilities: A Tutorial for Job Corps Staff
The Job Corps tutorial on Accommodating Students with Disabilities is designed to provide Job Corps admissions counselors and center staff with information and resources that will allow them to better support and meet the needs of applicants and students with disabilities, although it also offers resources and reference materials that are relevant to anyone who works on behalf of youth with disabilities.
The site provides an overview of (1) disability-related legislation and its applicability to Job Corps, (2) the different types of disabilities common in the adolescent/young adult population served by Job Corps, and (3) the basic etiquette staff should observe when interacting with individuals with varying abilities.
It also serves as a resource for staff-providing up-to-the-minute information on (1) the procedures and forms necessary to process an accommodation request, (2) materials (slides and handouts) available to support on-center training, and (3) the national and local resources available to offer advice on how best to provide services and support to individuals with disabilities. For more information go to http://www.jobcorpsdisability.com/

Disability Studies for Teachers
This website developed by the Center for Human Policy at Syracuse University contains lesson plans and materials designed to help teachers integrate disability studies into social studies, history, literature, and related subjects in grades 6-12. The plans and materials also can be adapted for use in postsecondary education. Lesson plans & essays on "disability studies" examine disability as a social, cultural, & political phenomenon. Among the topics: a history of deaf education, efforts to reform poorhouses in the 1840s & 1850s, P.T. Barnum & "freak shows," & conscientious objectors during World War II who exposed horrific conditions at state institutions, & an introduction to disability studies. http://www.disabilitystudiesforteachers.org/

Advocacy In Special Education: Free Internet Course
This course is part of a research study approved by Columbia University in New York. Participation is voluntary, all information is confidential, and there are no obligations. This course is designed to empower parents with the tools for successful advocacy by providing information on legal rights, special education documentation, and practical strategies for obtaining supports and services.
Course Elements: two surveys, three readings, self-study questions, and one short-answer assignment. Total time commitment 3-5 hours.
An extensive resource list with nearly 400 references to informative websites on special education law, advocacy strategies, disability information, parent networks, and many valuable national organizations, is yours to print and keep when you complete the course. Participants will also receive a course certificate and be entered to win one of five $25 gift certificates on Amazon.com.
The course is only available through fall 2004.
For more information or to register: advocacy@tc.columbia.edu.
Course Instructor, Principal Investigator: Andrea Sherwin Ripp, Ed.M., MS, OTR/L, advocacy@tc.columbia.edu, graduate student in special education at Teachers College, Columbia University in New York.

PLUK trainings and activities planned for 2004-05
PLUK & associate boards around the state have planned a number of training and activities for this upcoming school year. Mark your calendar if you are interested in participating.
Statewide Interactive Videoconferences

Parent's, Let's Unite for Kids - PLUK
516 N 32nd St
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800-222-7585; 406-255-0540; 406-255-0523 (fax)
plukinfo@pluk.org
http://www.pluk.org

Mission Statement: Parent's Let's Unite for Kids unites parents, professionals, families and friends of children with special needs to support one another, and share information for the benefit of their children.

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