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Newsletter Volume 9 Issue 1
Newsletter (Volume 9, Issue 1)
OFFICE OF DISABILITY CONCERNS
WILL'S CORNER, OKLAHOMA
(Serving the Disability Community of Oklahoma)
Volume 9, Issue 1
NEW BOOK ON ADVOCACY
The Office of Disability Concerns has produced a new state publication called The Little Book of Advocacy. This state publication is meant to be easily readable and usable by people who want to know how to be more successful in getting their needs met.
Most people do not approach the social-service delivery system with a full knowledge of what they need. Most of us figure the agencies are supposed to figure out what our needs are and meet those needs. If we continue in that frame of mind, we run a serious risk of not getting our needs met.
This publication may be just what you have been looking for. The first half of the book addresses simple things that anyone can do to get their needs met more effectively. Keeping a record of who you’ve contacted and what was said can be of enormous use in reminding you when to make that important follow-up call.
The last half of this informative publication talks about the appeals procedure in some of the most important public programs which serve people with disabilities in Oklahoma. Social Security, Special Education, Vocational Rehabilitation, the Oklahoma Department of Human Services and the Oklahoma Health Care Authority are discussed.
You will be given job titles and phone numbers of people in these agencies who will be able to assist you in getting your needs met. Check out the websites and the pamphlets you can request to give you specific information you need to know on how to pursue your interests.
This new state publication pulls together information from a lot of different resources within various agencies and puts it down in plain English you can understand. You no longer have to be satisfied when someone hands you what seems like an encyclopedia of information when you just have one simple question.
Check out our Table of Contents to quickly get you to the chapter you are interested in. Learn what you can do to effectively promote your needs.
There’s no reason to say “I didn’t know that” anymore. Sometimes the social-service structure is not there to meet your particular need right now, but you can learn how to advocate to get that need addressed in the future.
Many Oklahomans do not know how social services work. They are easily distracted from their needs and easily discouraged by agency employees who know agency policy a lot better than the general public.
Ask for that agency policy with the part that applies to you highlighted so you can refer back to it later. When you have learned the actual agency policy, you will better be able to challenge that policy to be more inclusive of the needs of people with disabilities.
The Little Book of Advocacy was written with you in mind. We at the Office of Disability Concerns take your calls everyday in which you express your needs asking for simple answers on how to get those needs addressed. We know what you’re looking for, and we’ve written it down in simple and concise language which anyone can understand.
“Finally someone has come up with something to let me know why my appeal keeps being denied,” said one Oklahoma man. “I didn’t know I could ask for that,” one consumer responded with total surprise.
You bet you can ask for that. And for the man whose appeal keeps being denied, I reminded him that there was a time frame he had to request an appeal. If he waited too long, his appeal was dead on arrival. It was never heard because the agency had a policy that the appeal must be initiated in a certain time.
This publication can be of enormous benefit in getting the needs of Oklahomans met in the arena of social services. It is filled with practical suggestions of things you can do to get your voice heard. Call 800-522-8224 or go to www.odc.ok.gov. Get your copy today.
Together 4 Kids
In November I attended a conference in Oklahoma City sponsored by the Oklahoma State Department of Education and other groups. The conference was free to the public and provided a lot of information which families of children in Special Education programs could enjoy. Many of you do not have the time to attend an all-day conference but do have five minutes to read an article. Will’s Corner, Oklahoma wants to save you time and get you the information you want with contact numbers to get further information if you want to know more.
Together 4 Kids was a conference held at the Springlake campus of Metrotech in Oklahoma City November 1, 2007. The conference was to educate the public on topics of interest in Special Education such as writing effective Individual Education Plans (IEP’s) and the discipline process. Organizers want to enhance good communication between families and education professionals to the benefit of children with disabilities.
Services for children with disabilities begin at birth through the Early Intervention SoonerStart program sponsored by the Oklahoma State Department of Education. Cynthia Bernardi-Valenzuela is the director of that program (405-521-4872).
The purpose of the program is to minimize the effects of disability on young children by intervening early with information and therapies. Families and daycare providers learn effective ways to work with children with disabilities.
Services are guided through development of Individual Family Service Plans (IFSP’s) which are similar to the IEP which guides services in the Special Education environment. SoonerStart is staffed by Service Coordinators who are located at 26 sites statewide, generally in county health departments.
The IFSP is the service plan which outlines agency responsibilities in responding to the needs of our youngest citizens. It is a living document with active strategies to address the needs of children with measurable goals capable of documenting results.
When children leave the SoonerStart program at age three, they may be served through the Special Education department of their local school district. Malissa Cook at the Oklahoma State Department of Education is Associate State Director of Special Education Services.
Ms. Cook counsels parents to not be intimidated at the meeting to establish services for their child. The Individualized Education Plan is a service document much like the IFSP which establishes a roadmap to serve children with special needs in the school setting.
The IEP should be individualized to your child’s particular needs. Parents are encouraged to be an active member of the IEP Team. They have vital knowledge of the child in the home environment which can be invaluable in coming up with a workable plan for the child.
Malissa Cook tells us that the IEP is a working document which can be amended at any time to fit the needs of the child with disabilities. Team members may insist the Team re-convene at a given time to assure that goals and objectives established in the IEP are successful.
An IEP meeting typically includes your child’s strengths and your concerns as a parent. It also includes the results of the most recent evaluation of your child and information on how your child is performing presently. The Team establishes goals and objectives for the child to assist better performance.
Establishing effective goals and objectives is vital to your child’s education. Effective goals should be measurable in a way that Team members can demonstrate if the child is successful. If a goal is either too easy to achieve or too difficult to achieve, the Team may re-convene to tailor that goal to better meet the needs of the student.
Goals and objectives in the IEP can cover a number of things besides academics. They may address behavioral concerns and/or learning life skills which will be of benefit to the student. IEP Teams have a freedom to look broadly at a child’s life and select skills which most enhance that child’s success later in life.
Anita Eccard addressed one breakout session on discipline in the Special Education setting. She states that if a student is suspended from school for more than ten days that the IEP Team will convene to address the situation. The Team will determine if whatever behavior is in question was caused by the child’s disability.
If the child’s behavioral concern is determined to be a manifestation of their disability, the Team will establish a Behavioral Intervention Plan (BIP) for the child. The BIP is to support the child.
If a child is suspended from school, that child must continue to receive a fair and appropriate education in another setting. Goals established in the child’s IEP continue in effect. The child may receive a functional behavioral assessment and behavior intervention services which will support the child.
If a child’s behavior is not deemed to be related to their disability, the child can be disciplined like anyone else according to the individual school’s policy. In cases where a child’s disability is an emotional disturbance, it is more difficult to separate the disability from the behavior involved.
A school is permitted to remove a child with a disability from the school setting for offenses involving a weapon or drugs. Serious bodily injury to another person can also be grounds for removal for up to 45 days. You may appeal a placement decision if you disagree with a decision.
Traci Castles is a parent of a child with disabilities, and she shared her perspective. She stressed that constant contact between the parent and teacher is very effective in meeting the needs of the student. She shares that she writes down on one sheet of paper some effective ways to work with her child, and she hands this out to all new teachers who will be working with her child. Teachers don’t have to re-invent the wheel on motivation.
Traci Castles also shared that bad behaviors in school frequently result because the child has poor social skills. She states that parents can teach good social skills such as sharing objects and learning good ways to get a friend’s attention. Good social skills go a long way in preventing the behaviors which negatively impact the child’s education.
For more information on Special Education including the IEP process and student discipline, ask for the Special Education Parent Handbook. This booklet provides a wealth of information including a short service directory with contact numbers of a number of agencies which may benefit your child. Call the Oklahoma State Department of Education at 405-521-4862 to order a copy.
Coming Soon: Online Enrollment for SoonerCare
Do you sometimes get tired waiting long periods of time in your local OKDHS office to apply for SoonerCare health benefits? Perhaps it is an embarrassment asking for help at a state office. Perhaps you would like a more neutral location which would be more like applying for private insurance? That may be possible with electronic enrollment in the SoonerCare health program.
You say you don’t have a computer in your home. Whether you have a computer with Internet access or not, you will still be able to use Internet access at a kiosk within your OKDHS office, your local library, perhaps a local hospital or at another location which is convenient to the public.
This has been propelled into planning by the Oklahoma Health Care Authority through a $6.1 million federal grant from the Centers for Medicare & Medicaid (CMS). The grant was awarded in October of 2007 and will continue through March of 2009 when the program will roll out for statewide use for some of the population served by OKDHS.
Both state agencies and community organizations will partner with the Oklahoma Health Care Authority in making online enrollment for SoonerCare a reality.
Other state agencies which have yet to be determined and some private, non-profit agencies may partner to assist the public in applying for SoonerCare. This will entail training of employees outside the Oklahoma Health Care Authority who will be assisting the public.
Derek Lieser is the Project Planning Manager for SoonerCare online enrollment and is administering the grant which has been awarded to the Oklahoma Health Care Authority.
Plans include streamlining the paper application which is presently five pages long. Also under consideration is providing links at key places during the online application to explain why certain information is needed
Use of the online application will be phased into various Medicaid populations in stages. Phase 1 will include children, pregnant women, adults with minor children and adults of working age between 19 and 64. (This is about 75 percent of those served.)
Phase 2 will include the population of those people aged, blind and disabled who are a little tougher group because they have to prove resources. Phase 3 would include people in nursing homes, people on the ADvantage Program and people with certain types of cancer.
Online enrollment is not currently available for Oklahomans desiring to apply for SoonerCare insurance. Even when online enrollment becomes available in Oklahoma, it will only be an option. You will still be able to go to OKDHS and complete a paper application with an OKDHS worker to guide you through the process.
The idea behind online enrollment is to provide 24-hour-a-day, seven-day-a-week access to SoonerCare enrollment. It will be a new, consumer-friendly way to better serve the public. If you would like to learn more about the SoonerCare online enrollment program, contact Derek Lieser at Derek.Lieser@OKHCA.org.
The Latest Colon Cancer Research
Many Oklahomans are not used to thinking of our state as a hotbed of cutting-edge cancer research, but we may have to reconsider—at least in the area of colorectal cancer research.
Dr. Courtney Houchen and Shrikant Anant, Ph.D have discovered how to turn off the function of a critical protein which is present in the development of cancerous tumors in the colons of laboratory animals. They have succeeded in halting the growth of these tumors by depriving them of this necessary protein.
Houchen and Anant have published their findings in the prestigious professional journal, Gastroenterology. Their research has appeared in the online version of this journal and will appear in the hard copy of the May, 2008 issue. Both men and their team of researchers work at the OU Health Sciences Center in Oklahoma City.
By developing a drug which will silence this key protein, they may be able to interrupt the growth of cancer in the colon. Colon cancer is the third most common kind of cancer in Oklahoma and can be expected to be fatal in about 720 of 1880 newly-diagnosed patients on any given year.
Houchen and Anant say they want to find out why this particular protein stimulates cancer cells to divide. They also want to learn why the protein seems to be so essential to the growth of this kind of cancer. Finally they would like to know how to make a better inhibitor of this protein which will specifically target colorectal cancer.
Houchen and Anant were successful in killing all the cancer cells in the colon of a laboratory animal and this includes killing adult cancer stem cells which were present. We’ve all heard good things about stem cells, but in the case of cancer stem cells, they are bad.
Because adult stem cells in a cancer growth divide slowly, they are often able to evade the effects of chemotherapy which destroys rapidly dividing cells. This is the reason that our present chemotherapy is only partially effective. It often ignores stem cells which re-start the cancer after the chemotherapy has been discontinued.
By targeting a specific protein necessary for a specific cancer, this new research opens up the possibility of killing the cancer only rather than our current shotgun approach of killing all rapidly dividing cells which may include many non-cancer cells.
So far research has been limited to working in a lab with cell culture systems and in animal models. Both these avenues have been successful. Moving onto human trials and a Federal Drug Administration approval of a drug may be several years off depending on funding.
Dr. Houchen currently has some funding from the National Institute of Health and Shrikant Anant also has some grants from that same institution. They now have about $1 million per year to run their program. They continue to apply for new grants all the time to fund their research. Funding is very competitive.
Houchen and Anant have been a team since 1997 when they were working at Washington University in St. Louis, Missouri. They have been in Oklahoma City for two years now. Having found a specific protein involved in the growth of cancer of the colon, they hope to identify other proteins which have a similar effect on other types of cancer.
Colon cancer is a major killer in the United States. It is the third leading cause of death by cancer after lung and breast cancer. People over 50 should have a colonoscopy every ten years to detect cancer in its early stages. People should consider a colonoscopy younger than age 50 if they have a history of colon cancer in their family.
CALENDAR OF EVENTS
May 17, 2008 The National Alliance on Mental Illness is sponsoring a fundraiser walk at Regatta Park in Oklahoma City. For more information contact Karina Forrest at 405-230-1900 or firstname.lastname@example.org.
May 20-22, 2008 This year’s conference on aging is entitled “Aging Out Loud”. It will take place at the Reed Center (5800 Will Rogers Road in Midwest City). For more information go to or 405-521-2281.
June 5-8, 2008 The 9th annual Endeavor Games for athletes with physical disabilities will take place at the University of Central Oklahoma in Edmond. For more information contact Shelly Ramsey at 405-974-3151 or Sramsey2@ucok.edu.
June 10-12, 2008 The Kansas Neurological Institute, Woodward Resource Center, Individual Support Systems, Inc. and the Alliance For Kansans with Developmental Disabilities are sponsoring “Building a Better Tomorrow: Best Practices in the Support of People With Disabilities” in Kansas City, Missouri. Registration is $99 per person through May 30.For more information contact http://www.bbtcon.com.
June 17-20, 2008 The Oklahoma Developmental Disabilities Council is sponsoring the Youth Leadership Forum for high school students with disabilities at the University of Science and Arts in Chickasha, Oklahoma. To find out more about the event call 405-521-4984 or 800-836-4470.
If you have an event coming up relating to disability, let us know at 800-522-8224 and we’ll help you publicize.