| Volume X, Issue 1 | March, 2003 |
Eastside Support GroupThe Eastside support group will be holding its first meeting Saturday, March 29 from 2-4pm at Overlake Hospital in Bellevue. It will be held in rooms C & D. Overlake Hospital is at 1035 116th Ave. NE. People who live on the Eastside will be receiving a letter regarding this first meeting. It is open to anyone however, regardless of where you live, so if you are interested, please come. For more information, contact the support group coordinators, Linda Nakasone (nlknakasone@attbi.com, 425-313-0979) or Patricia Boesen (pboesen@attbi.com, 425-869-2968). |
This is the first of what we hope to be a regular inclusion in our newsletter by your Chapter Co-Chairs. You have read over the past few newsletters of a number of changes in our chapter. This has involved the loss of some key board members who have done tremendous work for this chapter for many, many years. To Nanette Rosenthal and Meg Howard-Petosa, we are eternally grateful for all the work you have done, and continue to do to support our chapter. However, moving forward, we would like to assure you that as a chapter we are still vital and active. We are on an active recruiting drive to replenish our volunteers which we so desperately need. You can see a detailed list of what types of roles we are trying to fill in our Volunteer Corner on page 2. So please, if you feel you can help us, we would certainly like to hear from you.
Our goal as a chapter is to offer information, support and resources and to actively expand awareness and a greater understanding of Tourette Syndrome throughout our schools and community. To achieve this, we have a number of projects underway which are very exciting and fun to be involved with. We invite anyone to call us personally to talk about them or to sit in on one of our monthly board meetings. So please, let us hear from you!
Bernadette Witty (206) 780-5361 and Roseanne Torgerson (206) 322-4754, Chapter Co-Chairs.
Dear Insurance Claims Department: I am writing on behalf of ____________________, who has been diagnosed with Tourette Syndrome (TS).
TS is a neurobiological disorder. Symptoms include physical manifestations such as vocal and motor tics. Behavioral symptomatology may include obsessive traits and attention deficit disorder. Medical researchers currently believe that TS symptoms derive form a genetically transmitted chemical imbalance within the brain.
There is no "classic" or "typical" case of Tourette Syndrome. The range and severity of symptoms vary widely among those with this disorder. In addition, individuals with TS find that their symptoms wax and wane, change or become less severe over time.
Treatment of people affected by this disorder usually leads to improvement. Current medical therapy includes the use of medications developed primarily for the treatment of other disorders. Therefore, the effectiveness of treatment might be limited by side effects caused by these medications. Research is now vigorously underway to uncover more effective treatments.
TS is not a psychologically-based condition. That is why reimbursement for consultations and office follow-up visits should be considered on the basis of this being a medical condition rather than a mental health problem.
If you have questions, please to not hesitate to contact me or the national Tourette Syndrome Association at (718) 224-2999.Sincerely,
Seattle Center Academy puts middle school students and some of the Seattle area's best artists together for an intensive summer learning experience. They accommodate students with all types of disabilities, and help them develop their natural creative skills in arts and sciences. Transportation provided from most middle schools. Scholarships are available. For more information, go to their website at http://www.seattlecenter.org/SCA.htm or contact them at (206) 615-1819 or academysc@seattle.gov.
When a disabled child under the age of 18 lives with his parent(s), SSI law requires that certain amounts of the parents' income and assets be considered as belonging to the child for SSI eligibility purposes. This process is known as "deeming" in SSI terminology.
The deeming process has a number of exemptions and "set asides" for the members of the family who are not disabled. Essentially, the parents or parent are treated as if they were SSI eligible and any income and assets above amounts to make the parent(s) ineligible are deemed to the disabled child. For other children who are not disabled, $272 a month (2002 amount) is set aside for the needs of each ineligible child before income is "deemed" to the disabled child.
The deeming of resources usually means that the parents have "countable" assets (usually this means money in the bank and other liquid assets) "over" the SSI limits. Money held in the parents' IRA or Keogh account is exempt. Cars used for employment and medical purposes are exempt, etc. If self-employed, business assets are exempt. If for example, two parents have $4,000 in savings, the first $3,000 is exempt under the parent resource limit and the extra $1,000 counts toward the eligible child. Since the child is allowed to have $2,000 in resources, the child is "resource" eligible.
The amount of income that a household may have can fluctuate a great deal. If a disabled child has been denied SSI because of too much income, a change in income or household composition can mean that the child could now be eligible for SSI cash payments and "categorical" Medicaid. When a child is ineligible for SSI because of parents' income, the child can file for Medicaid under the "medically needy" program at the DSHS CSO. To qualify, the amount of income over and above the amount that causes loss of SSI payments must be used to participate in the cost of medical care. We all know this as""spend down." When household income falls to a point that could allow SSI eligibility, the CSO financial worker may or may not take the time to refer the family to the Social Security Administration (SSA) to file for SSI cash benefits.
The chart below is intended to show the amount of parental earned income that results in loss of SSI cash payments. Monthly earned income, under the amounts shown mean that a disabled child could be income eligible and it may be appropriate to refer the family to SSA.
Some families have received SSI in the past and when benefits stop because of increases in household income, have not recontacted SSA to request reinstatement of benefits. Under SSI rules, a recipient can be in a "non-pay" status for up to one year (12 months) and then report a change that will allow payments to begin again. A new claim is not necessary. SSA uses the term "payment suspension" to describe a temporary period of non-payment. "Termination" of benefits only applies if there are 12 months of non-payment, the client is no longer disabled or dies.
The chart below can help DSHS staff, advocates and others identify situations in which an initial referral can be made to SSA or a client who once received benefits can be reinstated after a change in income.
As described above, the SSI process of attributing income and assets to a minor child living at home is called deeming. This chart should only be used as a guide. Since SSI can be very complex, there can be a lot of variables. The chart shows the amount of "earned" income (wages, self-employment) received in a month which results in loss of cash SSI eligibility when there is ONE disabled child under age 18 in the household. The chart assumes the household is resource eligible. These amounts are for FY 2002.
Number of non- disabled children under age 18 (in the household) | Amount of Monthly Gross Earned Income that results in loss of SSI payments | |
|---|---|---|
| TWO PARENTS | ONE PARENT | |
| 0 | $2,900.80 | $2,356.80 |
| 1 | $3,172.80 | $2,628.80 |
| 2 | $3,444.80 | $2,900.80 |
| 3 | $3,716.80 | $3,172.80 |
| 4 | $3,988.80 | $3,444.80 |
Do Not Use this Chart If:
Notes:
If you have any questions on deeming or on the chart, call Loren Gomez at (509) 225-7968.
Hope Press has published another new book which may be of interest to our chapter members. Entitled ADHD: A Survival Guide for Parents and Teachers, it offers clear, practical and easily understood strategies to deal with ADHD children. It was written by Richard A. Lougy, MFT and David K. Rosenthal, MD. You can review its table of contents at Hope Press' website, http://www.hopepress.com. Hope Press publishes many titles of interest to people with TS and associated disorders. Some of their other books include: Tourette Syndrome and Human Behavior, Teaching the Tiger, Search for the TS and Human Behavior Genes, ADD Kaleidoscope, Echolalia: A Novel, What Makes Ryan Tick, Diysinhibition Syndrome and more.
The transition from high school to college can be difficult for anyone. The student with Tourette Syndrome (TS) may face more challenges, so it is important to begin preparing for the transition as early as possible. The process used for requesting academic accommodations at college is very different than the process used in high school. In college, it is the student's responsibility to request academic accommodations. If the student needs academic accommodations in college, he* must seek out the appropriate office, submit documentation, and request academic accommodations well in advance of the quarter in which they will be needed. This is very different from high school where the school held the responsibility of determining the need for services. Each college has a Disability Services office, or a person designated to provide academic accommodations. It is important for the student to find out who he should talk with at the college he is considering attending, and set up a time to meet with that person. The student may find it helpful to bring a list of his questions to the meeting so all of his concerns are addressed.
As the student with TS may have specific needs while in college, it is important to research colleges to find one that works best for him. When looking at a school, consider the following questions: What types of services are available through the Disability Services office? Does the college have tutoring available to students on campus? What other types of services do other departments offer at the college? How large are the classes? Will there be much direct interaction with the instructor, or would the student be primarily working with a teaching assistant? What types of extracurricular activities are offered? Are there many quiet places to study on campus? Are there limitations on the number of classes a student can drop each year?
The student should contact the Disability Services office on campus early (several months before attending college) to see what that school requires for documentation. Once the documentation has been submitted, the student will go through an "intake" appointment with the director during which they will determine what types of accommodations are necessary to ensure equal access. He may have to take a placement test to determine which English and math classes he should start with. Accommodations such as additional time may be requested for placement exams.
Once a student starts college, he will need to communicate his accommodation needs with his instructors each quarter. If a student has never done this before, it would be helpful to start practicing this type of communication with his high school teachers prior to graduating. The students should be able to talk about his specific disability, how it impacts him academically, and the types of accommodations that have proven beneficial to him in the past. Practicing these conversations with high school teachers prior to going to college is a helpful way to sharpen self-advocacy skills, and helps a student feel confident when communicating with his professors. It is never too early to begin, as these are essential skills for starting college. During this meeting the student may want to discuss the way his disability manifests including the specific tics and vocalizations that may happen in class. Teachers may not know what a tic is or what it looks like when someone has tics, so any information that can be provided ahead of time would be very beneficial to the teacher. If the student may experience many tics or vocalizations in class, it may also be appropriate for the teacher or the student to have a discussion with the class to let other students know that the tics or vocalizations are part of a disability (NOTE: it is not required that the teacher or the student disclose this information to the class, but can be done on a case by case basis if/when the student feels comfortable with such a disclosure).
It is important for the student to work closely with an academic advisor each quarter when selecting classes. The student should find an advisor with whom he works well, and try to continue with that same person throughout his enrollment in that school. The student should let his advisor know about his specific type of disability so the advisor can take that into consideration when helping to select courses. The student should consider taking a study skills course the first quarter of enrollment to help sharpen those skills at the beginning of his college experience.
The student should focus on setting himself up for success when selecting classes. Rather than overloading his first quarter, he should consider taking only one or two classes instead of a full-time load, if possible. The student with TS should try to schedule a break in between classes, as his tics may increase if he has to focus in class for two or three hours straight. The break can be used to review the material just presented in class, or prepare for the next class.
It is important for the student with TS to select his courses and instructors carefully, as the teaching style and structure of the class can contribute to the student's success in that class. Students with TS tend to do better in classes that are very structured, with clear course expectations outlined at the beginning of the course. The student can get feedback about classes and instructors' teaching styles by talking with other students who may have had experience with that class or instructor. Another way to get information about classes is by setting up a time to talk with instructors prior to registering for their class. Asking the instructor for a copy of the course syllabus to determine the content of the course, the projects or papers that will be assigned, and the type of grading system utilized for that class can be helpful.
It is essential for the student to be as organized as possible while attending college. Instructors hold students responsible for remembering when to turn in assignments and being prepared for exam days. As with any other student, the student with TS must develop a system to keep track of this information. In most instances, instructors do not remind students of due dates, or inform students when they have missing assignments. Valuable points may be lost for turning in an assignment late, and could result in a low grade for that course. It is also important to have a complete understanding of assignments before beginning to work on them. The student should plan on meeting with instructors outside of class if he has questions that are not addressed in class. Most instructors have office hours where students can drop by and ask questions. It is especially important for the student not to procrastinate on his homework or studies. The student needs to start working on assignments early, rather than waiting until the last minute.
It is very helpful for all college students, including students with TS, to use a day planner or personal calendar. Write down ALL assignments, readings, exam days and other class related information at the beginning of each quarter. The student will find it helpful to establish a routine for checking the calendar each day to be sure that nothing gets overlooked. Color-coding information for each class may help keep track of things, and breaking larger assignments down into small tasks makes the assignment more manageable.
Students with TS can and do succeed in college. Every year many of these students graduate from colleges throughout the nation. Students with TS who take the time to plan ahead, utilize the services available in the Disability Services office, and develop a tracking system for class assignments are much more likely to have a successful college experience.
*For ease of reading, the masculine pronoun is used throughout the article.
Kathy Cook is the Director of the Center for Disability Services at Everett Community College in Everett.
by Reed Martin, JDby Reed Martin, JD
Parents often contact us about Section 504 and Special Education rights. They have been told by their school that the IDEA is special education and that Section 504 deals with accommodations, or whatever.
We recently received a nice but critical email from a parent who claimed to have been embarrassed by using terminology that seemed to blur the differences between the IDEA (special ed) and Section 504.
The parent should not be embarrassed it is the public school that is confused.
Reed Martin is an attorney with 33 years experience in special education law and recognized as one of the nation's leading experts. His website has many useful articles regarding IDEA and Section 504. He can be reached through email at connie@reedmartin.com or http://www.reedmartin.com
by B. Duncan McKinlay, Ph.D.
Editor's Note: Duncan McKinlay has written a series of articles regarding living as an adult with TS. Here is number 17 in his series.
Continuing with "TS and Employment," we left off last time at the initial job interview:
Visit "Life's A Twitch!" at www.lifesatwitch.com
Copyright May, 2002. Reprinted with permission.
"My Administration is committed to tearing down the barriers to equality that face many of the 54 million Americans with disabilities. Eleven years ago the Americans with Disabilities Act (ADA) made it a violation of federal law to discriminate against a person with a disability. But there is much more to do."
President George W. Bush
ADA - As for some of his other promises, which included supporting the ADA (Americans with Disabilities Act) and IDEA (the Individuals with Disabilities Education Act), I have also found his actions do not reflect his words. Both of these laws have been under attack for quite some time on the legislative and judicial fronts. The president has nominated Jeffrey S. Sutton for a seat on the bench of the U.S. Court of Appeals. Sutton has a record of seeking out cases which he believes can lead to the Court overturning provisions providing protection under the ADA. An advocate of state's rights, he represented the state of Georgia in the U.S. Supreme Court in the case of Olmstead v. L.C. In this case he argued that keeping people with disabilities segregated in institutions instead of in community care settings was not a form of discrimination. He also argued that the ADA does not require states to provide the "least restrictive treatment" for the disabled. If the Court had ruled in his favor, this could have had drastic ramifications on the Individual with Disabilities Education Act, which provides for the education of children with special needs in the least restrictive environment.
Sutton had better luck when he represented the State of Alabama in Board of Trustees of The University of Alabama v. Garrett. In this case he helped persuade the Supreme Court to rule 5-4 that Congress did not have the power to pass laws which allowed state employees to sue their employers for damages under Title I of the ADA. He also argued before the Court that Congress does not have the authority to allow private individuals to bring lawsuits under the provisions of the Spending Clause. The Spending Clause of the Constitution has historically been used to insure that programs which receive federal funding do not discriminate against individuals on the basis of disability, race, age or religion. In the case of Alexander v. Sandoval, argued by Sutton, the Court ruled that the Spending Clause does not provide a method for Congress to give individuals the right to file suit to prevent discrimination on the basis of race. The Court agreed with Sutton and since that time States have begun to use the Sandoval decision to attempt to persuade courts that individuals with disabilities should not be able to enforce regulations under Section 504 of the ADA. This section requires reasonable accommodations and integration of individuals with disabilities. The U.S. Senate must confirm Sutton's nomination before he can take a seat on the bench of the 6th Court of Appeals. If any of his views concern you, I would highly recommend that you contact your Senator and let them know you oppose his nomination.
IDEA - The U.S. Senate and House have also proposed different funding levels for The Elementary and Secondary Education Act and the IDEA. The Administration's proposals and the House-passed bill underfund the mandates of both programs. A committee will hash out the differences before a final vote of Congress. This bill will then be presented to the President. Let them know you support full and fair funding for education.
Mental Health Parity - One piece of legislation we've been working on for years is a state law providing for parity in mental health insurance coverage. The Washington Coalition for Insurance Parity will introduce a mental health parity bill again this year. Because of heavy lobbying by insurance companies and unfounded fears of large premium increases, this legislation has not yet passed. This is in spite of the fact that numerous studies show this type of legislation will only increase insurance premiums by 1-2%, if any. And when factoring in such things as reduced sick time, increased productivity by employees, and less doctor visits, in many cases covering mental health conditions results in an overall savings for everybody concerned. Admittedly, it is difficult to get this message across, and many politicians will fear voting for any new program this year. But we feel this legislation cannot be forgotten. So the Washington Coalition for Insurance Parity has plans to introduce a compromise bill which will phase in parity over the next six years. Our chapter is a member of the Coalition. They are looking for volunteers to help push through this legislation. If you are interested, contact Phil Jordan at 425-776-1199 or PhilJ@wpas-rights.org for more information.
Neurodevelopmental Therapy - House Bill 1067/ Senate Bill 5445, is sponsored by Representatives Campbell and Cody and Senators Reardon and Thibaudeau. This bill relates to insurance coverage for neurodevelopmental therapies and would extend health plan coverage for neurodevelop-mental therapies to children under the age of 18 for public employees and employer-sponsored group policies for comprehensive health insurance.
Age of Consent - Another proposed law would change the age of consent for mental health treatment from age 13 to age 16. Ideally, a parent would always be involved in any type of treatment for their child, but sadly there are times when this could put a child a risk. In those few cases, this bill could be a lifesaver. Unfortunately, I don't have a bill number as of this writing, but you can just let your legislator know you support the bill lowering the age of consent for mental health treatment if you do support this legislation.
Law Enforcement Training - Senate Bill 5473, sponsored by Senator Regala, would require law enforcement agencies to provide training in interacting with those with mental illness or disabilities for their officers. This could include a program that could help educate the police on the symptoms of Tourette Syndrome.
Contact Information:Toll-free legislative hotline: 1-800-562-6000.To contact President Bush:To find information about your state representatives:
http://dfind.leg.wa.gov/dfinder.cfmFor Information on your U.S. Congressperson, you can go to:
http://clerk.House.gov/members/index.PhpInformation for your U.S. Senator can be found at:
http://www.Senate.gov/index.htm
The White House,
1600 Pennsylvania Avenue NW
Washington, DC 20500
Comments: 202-456-1111, 202-456-6213 (TTY/TDDY)
Switchboard: 202-456-1414
FAX: 202-456-2461
Condensed from a 1/7/03 Seattle Times article.
Date: 3/13-16
Location: Camp Arnold, outside of Eatonville,WA.
Cost: $150 -220 includes lodging and meals.
Contact: (206) 622-2127 or www.nwchadd.org for more information
Date: 3/13
Time: 1:00pm-4:00pm
Location: Comfort Inn, Zillah
Workshop: Foster Parents Responsibilities and Special Education
Contact: Sherry Mashburn, (877) 821-4113
Date: 3/21 & 3/22
Time: 6:00pm-9:00pm & 8:00am-4:30pm
Location: Provident Medical Center, 110 9th Ave., Yakima
Workshop: 9th Annual ADD Conference
Contact: Sherry Mashburn, (877) 821-4113
Date: 3/25
Time: 6:00pm-9:00pm
Location: White Salmon
Workshop: Foster Parents Responsibilities and Special Education
Contact: Sherry Mashburn, (877) 821-4113
Date: 4/4
Time: 9:30am-4:30pm
Location: Redmond
Workshop: Understanding the IEP
Contact: Karen Anderson 1-(800) 572-7368
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