2nd Annual Texas Parent to Parent Conference Connecting Families
of Children with Disabilities & Special Health Care Needs

Friday & Saturday, August 4th - 5th, 2006

Seminar Tracks will include Special Education, Transition, Medical, Therapies, Behavior, Autism, Mental Health, Advocacy, Self-Determination, General Parenting Topics,
and Sessions provided in Spanish

 And preceding the conference, an opportunity to attend

Special Ed Law and Advocacy Seminar

Thursday, August 3rd, 2006

St. Edward’s University, Ragsdale Center
3001 South Congress Blvd., Austin, Texas

You can register for the Wrightslaw Seminar now on our website or call us at 866-896-6001
to register over the phone. Registration forms for the conference will be mailed
out the 3rd week of April!!

Transition from adolescence to adulthood is an exciting time. There is much to learn. There are many new experiences. It is common and healthy for teenagers to want to do things on their own. Teens need to be encouraged to grow and try new responsibilities.
Before being able to be and do things on their own, teens need to develop skills for independent living. They need friends and time and places to play, relax and meet with other people. They need to think about education beyond high school and employment. They need to understand about how to get around (transportation). They must determine where to live (housing).
Teens also need to learn about and understand their health care needs. They need to participate in making decisions about their health. They likely will need to make changes in the ways they get medical care. They may need to change doctors. Learning this information, developing these skills, and making these changes also are called health care transition.
Successful health care transition, like all transitions from adolescence to adulthood, should be planned, purposeful, and gradual. There are many lessons to be learned and skills to develop.
Some of the health care lessons that need to be learned include–

1. Basic knowledge and management of health condition
2. Health care, personal hygiene practices and healthy life choices
3. Medications, tests, equipment and supplies
4. Doctor visits, interactions with health professionals
5. Health care transition goal setting
6. Transition and accepting responsibilities away from home
7. Health care systems, records, insurance, emergencies

Begin planning early:
Some sources recommend beginning the initial planning processes as early as age 12, though the certain consensus is to begin by age 14. Some activities may occur sooner or later, depending upon the child. Beginning early is crucial for several important reasons.

• Health transition is fundamentally a learning process for the child, family and provider(s).
• Many aspects of health care information are complicated.
• Learning takes time and positive reinforcement.
• People need time to adapt and accomplish new behaviors.
• Adolescence tests a person’s ability and capacity for change. Children may grow into behaviors and responsibilities that surpass expectations (or not).
• Many life changes are difficult.
• Relationships with new providers or health systems need nurturing and time to strengthen.
• Privacy, custody, confidentiality and other legal issues must not be resolved haphazardly.
• Transitioning to different health benefits systems (including publicly funded systems such as Social Security Supplemental Security Income or Medicaid long term care waiver programs) may involve lengthy application and eligibility processes, waiting periods to overcome existing condition limitations, and/or waiting lists.

Approach transition as a team:
In addition to beginning early, it’s important to approach health transition as a team. The key team members are the adolescent, family member(s), and primary and specialty care pediatric and adult practitioners. In some cases, transition team members might also include other key service providers. Examples include physical or occupational therapists, speech language pathologists, mental health professionals, and durable medical equipment suppliers. All of these have potential roles in successful health care transition.
If social workers, health care case managers, or care coordinators are available, they can be important also, and for clients of the Children with Special Health Care Needs (CSHCN) Services Program in Texas , regional case management staff or contractors also are able to assist.
Through the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA), the public rehabilitation and education systems have legal mandates to provide employment and education transition services. These systems may not fully address the specifics of health care transition, but parents or teens may seek to include learning experiences for health care transition as part of Individual Educational or Transition Plans.
Make transition empowering:
Finally, and fundamental to health transition is the concept that, at various times, the adolescent is beginning, continuing, or completing a change toward autonomy, self-determination, self-sufficiency, and independence in the management of health care, to the extent that the young person is able to achieve those outcomes.
Health care transition involves one of the most intimate aspects of life and living, and the transition team is in an exceptional position to facilitate empowerment for the child. Certainly, successful health care transition is empowering for the young adult, but it is also empowering for parents and other family members, and it can be professionally satisfying for pediatric providers.
More information about transition is available on the Transition page of the CSHCN Services Program web site. Go to www.dshs.state.tx.us/cshcn. Click on “Transition Information” in the menu on the left side of the home page. There are web links to other resources, including websites primarily for youth and/or families.

The Tap2 Adult Education series at Congregation Agudas Achim recently offered a class called Standing at the Fence: Jewish Ideas about Gossip and Careless Talk (Lashon haRa). The four part course was taught by Hazzan Neil Blumofe. Literally, lashon haRa means ‘evil tongue,’ and is commonly translated as evil speech or gossip.
Our daughter, Sophie, has become a familiar member of our community. She is outgoing, friendly, and full of energy. All of you who know her recognize that Sophie has a disability. Many people also notice her strengths and abilities. Yet, I am surprised at how often the contributions that Sophie and others with disabilities bring to our world are overlooked. Since taking the Tap2 class, I have begun to recognize parallels between the ways people with disabilities are often spoken about, and lashon haRa. I am sharing my thoughts with the hope that individuals with disabilities are spoken about in a way that adds to the holiness in our world. I envision a time when all of us are valued for our differences and unique gifts.
Our tradition teaches nishmat chayim. That is, through speaking, God created the world. According to our mystical tradition, the tongue is where body and soul merge. Speaking in a way that is potentially harmful to another can lead to the death of one’s soul. The words we choose have the power to magnify or diminish holiness in the world. Some say this impacts both the way we live and how we are remembered. Our children learn by our example and our words impact our legacy. Being mindful of the power of words and ensuring that what we say honors the divine spirit in everyone, is a constant, ongoing struggle.
When Sophie was born, I would describe her as having ‘special needs.’ I soon learned to give more thought to the word, ‘special’. When Sophie was 2, our son Jeremy, age 5 at the time, said to me, “I wish I had special needs.” He was tired of hearing how ‘special’ his sister was, and I stopped using the word. We need to recognize that typical kids in a school or recreational setting probably do not enjoyhearing about another child being singled out as ‘special.’
Kathie Snow, a nationally known author and speaker on People First Language, points out that in the context of disabilities, the word ‘special’ means, ‘separated’ or ‘segregated.’ She also says she has never met an adult who wanted to be referred to as ‘special.’ Snow even questions the ‘Special’ Olympics. She wonders what the world would be like if the resources of that organization were used to create programs and provide supports so that individuals with disabilities could participate in similar activities with everyone else. In a free society, segregating an individual because of a disability is considered discrimination. As Jews, doing so violates the fundamental value we place on community as well as our teaching that we are all created in the Divine Image.
People First Language is a way of speaking about individuals with disabilities that focuses on the person and not their disability. Often the labels we attach to someone may be harmful or create barriers. When we speak about a person in a way that diminishes them, even when unintentional, it is lashon haRa. Negative labels that emphasize a condition a person has, rather than who he or she is, interfere with our ability to encounter the person as a wonderful, unique individual. Through an increased awareness of the importance of People First Language, we are able to choose words that foster inclusion and honor the sanctity of people with differences.
A person is devalued when they are branded primarily by a diagnosis or a disability. For example, often we hear someone say, “he is ADD” or “she is autistic” instead of “he has ADD’ or “she has a diagnosis of autism.” When a man was recently shot on a plane by a federal air marshal, we heard the media report that the man “was bipolar.” Someone may have a diagnosis of ADD, autism, or bipolar disorder, but that is not who they are. In addition, just as it is rarely relevant to mention someone’s skin color, there is often no need to mention whether or not a person has a disability.
It is importantto rethink how we use the word ‘disabled’. To say a student is ‘learning disabled’ devalues them and implies that they are broken (like a disabled car.) Instead, saying a child has a learning disability distinguishes between the person and a particular characteristic. Even better would be to say the student needs instructions repeated slowly or needs extra time to finish an assignment. When a child hears herself, often repeatedly, described as ‘disabled,’ what impact does that have on her self-image? All kids, especially those with learning challenges, benefit from positive messages which describe their strengths and abilities.
Another way of putting people first is to eliminate using of words which, no matter how they are expressed, denigrate a person. The word, ‘handicapped’ tops the list. A handicap is a barrier created by people or in the environment, such as a staircase for people who use wheelchairs. When it comes to embracing and including people with disabilities, often the biggest barriers come from people’s attitudes. The “h” word is not an appropriate descriptor for a parking space or bathroom and has been eliminated from all federal legislation.
Another word which is degrading when describing a person is ‘retarded’, or ‘mentally retarded.’ All of us have challenges learning something. Fortunately my teenage son doesn’t go around saying that his mom is ‘technically retarded.’ Who wants to hear that? As Sophie’s mom, I find these words hurtful. They do not in any way describe the beloved child who fills our world with light and joy.
By choosing our words carefully, we help insure that people with disabilities are embraced and included. Our words express that everyone is respected for their differences and valued for their unique contributions to the community. A heightened awareness of People First Language helps us create holiness in the world.
Ivy Goldstein, proud mom of Jeremy and Sophie, is a participant in the current Partners in Policymaking program. Partners is a worldwide advocacy training program for parents of children with disabilities and adults with disabilities. She is especially interested in efforts that promote the full inclusion of Jewish children and adults in all aspects of Jewish life in Austin . She welcomes your comments and can be reached at ivysgold@yahoo.com

Here are examples of how to use People First Language:
(Adapted with permission from Kathie Snow’s People First Language article which can be found at www.disabilityisnatural.com)

Say:	Instead of:
People with disabilities	The handicapped or disabled
He has a cognitive disability.	He is retarded. (or MR)
She has a diagnosis of Down Syndrome.	She’s Downs’
He has a physical disability.	He’s quadriplegic. (or crippled).
She has a mental health diagnosis.	She’s mentally ill/emotionally disturbed
He has schizophrenia.	He is schizophrenic.
She uses a wheelchair.	She is confined (or bound) to a wheelchair.
He receives special ed services.	He is in special ed.
She has a developmental disability.	She is developmentally disabled.
He has a congenital disability.	He has a birth defect.
She has a brain injury.	She is brain damaged.
He has a seizure disorder (or dx of epilepsy).	He is epileptic.
She communicates with her eyes (or a device).	She is non-verbal.
Children (or people) without disabilities	Normal, able-bodied, or healthy
Accessible parking, bathroom, etc…	Handicapped parking, bathroom
She needs…. or she uses….	She has problems, special needs

Avoid words like:
Unfortunate, lame, victim, afflicted, suffers from, stricken with, invalid, deformed, disadvantaged. These words evoke unwanted sympathy or pity. People with disabilities want to be respected, accepted and included, just like everyone else.

In the world of Texas politics and Texas policy, the interim is the time between legislative sessions. The current interim began in June of 2005 and will go until the beginning of the next legislative session in January 2007. Interim periods used to be considered the quiet time after a grueling session, or the calm before the storm. Those days, however, seem to be long gone. During interim sessions, the agencies responsible for implementing legislation (i.e., Health and Human Services Commission, Dept. on Aging and Disability Services, Dept. etc.) work furiously to get programs developed, rules in place, contracts procured, and much more. The interim is anything but quiet. All of these activities provide numerous opportunities for individuals and families to become involved in the development of policies that affect both adults and children with disabilities.
In addition to the work happening at the agencies, legislators work on interim charges. Each legislative committee is assigned a number of charges by the lieutenant governor or the speaker of the house. These charges require the committees to address specific issues. The committees are directed to research, analyze, and develop specific recommendations for each of the charges. This can be an incredible amount of work. Both the Senate and the House interim charges have been released and the work will begin soon. These interim charges and the subsequent studies and reports are important because they often generate legislative proposals for the next legislative session. These proposals can significantly impact children and adults with disabilities and the programs important to them. Some examples of the charges for this interim include:
House Human Services Committee
Charge #2 – Study the effectiveness, efficiency and funding mechanisms of mental health and mental retardation services. Identify and study best practices in crisis intervention, residential treatment and aftercare. Identify and study successful mental health services delivery models established by other states.
House Appropriations Committee
Charge #6 – Analyze and compare service coordination and other administrative functions across waiver programs as a continuation of the health and human services system consolidation and optimization. This analysis should include evaluation processes, procedures, outcomes and costs with the intent of ensuring quality, defining best practices and reducing costs.
Senate Education Committee
Charge #5 - Review and make recommendations, if necessary, that streamline and clarify Chapter 37 of the Education Code dealing with student discipline.  Include a study of state accountability measures for disciplinary alternative education programs to evaluate academic performance and effectiveness in modifying behavior.  Include a study of the effects of zero tolerance practices and other changes made by the 79th Legislature.  Include a review of after school prevention programs.
Senate Finance Committee
Charge #4.   Review health care funding, focusing on the Medicaid program, Medicare Part D, hospital reimbursements and trauma and indigent care.

• Senate Health and Human Services
• Charge #1 – Study and make recommendations for improving delivery of Texas' mental health services; consider local and regional delivery systems including access to care, cost effectiveness, choice and competition, and quality of care.
• Charge #2.  - Monitor state and federal Medicaid reform proposals, including their impact on the Medicaid program in Texas , as well as cost-containment measures in other states, and make recommendations for legislative action, as appropriate.    
• Charge #10 - Monitor the implementation of H.B. 2292, 78th Legislature, Regular Session, relating to health and human services.  Focus on implementation of service coordination and consolidation efforts to assess the impact on service quality, while reducing costs.
• These charges and the subsequent studies are great opportunities for individuals and families to have a voice in the development of future policies that have the potential of affecting our children. Information on the committee hearings can be obtained at the website www.capitol.state.tx.us. This is an easy site to maneuver and provides a lot of information on the various committees and committee meetings. Another great way to get information on the various charges is to call the committee clerk of the committee the charge you are interested in is assigned to (i.e., House Public Education Committee, Senate Health and Human Services Committee). You can call the capitol operator at 512-463-4630 and ask to be connected to a particular committee office. The staff can tell you when a particular charge may be discussed in a hearing, the scope of the analysis, pertinent timelines, and how your ideas and opinions can be included in the discussions. They are typically eager to hear from folks around the state to get a better idea of how the issues impact Texas citizens.
• As always, if you would like to participate but need some help or additional information please contact me at colleen.horton@mail.utexas.edu. And, as always, remember that if you’re not willing to help with the solutions, you don’t hold much ground when you’re complaining about the problem.

A group in Texas is currently being formed for infants, children, and teenagers with CHARGE Syndrome along with their siblings, parents and professionals. We're called the TEXAS CHARGERS and we are dedicated to helping give the Texas Chargers a better quality of life. The goal of the TEXAS CHARGERS is to meet bi-annually to discuss the physical and emotional needs of our children with CHARGE through the sharing of information and the building of a support network. So, mark your calendars for the 1st Texas Chargers Retreat on October 7th 2006 at Peaceable Kingdom Retreat (peaceablekingdomretreat.org) in Killeen , Texas . This retreat will provide a stress free day for the families to come out and connect with others. The day will include sharing information on raising a child with special health care needs in Texas and activities such as a carnival with balloons, arts and crafts, face painting, cotton candy, snow cones and a train ride. We will also have lunch and enjoy the activities at Peaceable Kingdom which include an Indian campground, miniature golf, dinosaur tracks, a theatre & game room, swimming pool and nature trails. If you would like to receive a registration package or be on the membership list, please contact Cathy Springer at dacspringer@austin.rr.com or
512-255-3176. You won't want to miss all the fun so make sure you mark you calendars!
Keep reading future newsletters for more information about the Texas CHARGERS and we look forward to seeing all of you on October 7th at Peaceable Kingdom.

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You're my "sisters."  Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives change. Something wasn't quite right.  Then we found ourselves mothers of children with disabilities or other health care needs.
We are united, we sisters, regardless of the diversity of our children's needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's.  We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.  Without formal education, we could become board certified in neurology, endocrinology and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive and to flourish.  We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to the insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if it means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line.  We have tolerated inane suggestions and home remedies from well-meaning strangers.
We have tolerated mothers of children without disabilities, complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A trip to Holland " and Erma Bombeck's "The Special Mother".  We keep them by our bedside and read and re-read them during our toughest hours.
We have coped with holidays. We have found ways to get our children to the neighbors' front door on Halloween, and we have found ways to help our children who are deaf form words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our children who are blind. We have pureed turkey on Thanksgiving.  We have bought white chocolate bunnies for Easter.  And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.  And we've mourned because we left the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our children and our belief in all that they will achieve in life knows no bounds.  We dream of them scoring touchdowns and extra points and home runs.  We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands and together, we reach for the stars.
Author Unknown

Now that the FOA has passed, the action shifts to the state-level. The Medicaid Buy-In is a state option. In most cases, the legislature will have to adopt it. Family Voices Network Members can begin the discussion by talking with your State Medicaid Director, the Governor’s Office, State Medicaid Advisory Board, and state legislators. Here are some points to mention during your discussions:

• Middle-income families of children and youth with special health care needs often face difficult choices in order to provide health care for their family. These choices can include: bankruptcy, surrendering custody to the state to ensure Medicaid coverage for their child/youth, or spending down their resources/turning down raises to stay eligible for Medicaid.
• The Medicaid buy-in allows working families of children and youth with special health care needs to purchase Medicaid. This allows Medicaid to act as a wrap-around for medically necessary services denied them by their private insurance plan.
• The Medicaid Buy-In is not an entitlement program. Families must maintain their own private insurance if they have it. The state will be expanding services to working families, many who already have private insurance but must pay high out-of-pocket costs for services not covered by their health plan. The Medicaid wrap-around prevents rising uncompensated care costs.
• The Medicaid Buy-In is not an entitlement program because families must use a significant portion of their income to pay for it. However, in most cases, these costs will be significantly cheaper than the out-of-pocket costs they are paying for the actual services.
• Families previously considering bankruptcy or surrendering custody of their child/youth to the state will now have the option to purchase Medicaid for their children. This state option keeps families working and participating in the state income/property tax structure. It also prevents them from having to join the ranks of the uninsured which leaves the full burden of their cost of care on the state.

Our 2nd Annual TxP2P Parent Conference will be upon us shortly and the registration has kept us hopping in the office. Registration for both the conference and Wrightslaw has far exceeded our expectations. By the time you receive this, the child care, SibShop, and hotel stipends will be closed and Wrightslaw and the Family Gathering may also have to be closed. We wish we could accommodate more of you but we’ve already doubled last year’s conference registration and St. Edward’s University has run out of rooms for us. We’ll have to find a bigger space for next year! Thank you to all those that are contributing to making this conference a reality (TxP2P staff and Board, our sponsors, speakers, exhibitors, volunteers, St. Ed’s, child care workers) and to all of you for making it so popular!
This year’s conference has lots of exciting new items! We have a pre-conference session this year with Wrightslaw. Our family gathering this year will have entertainment by We Are the Chorus and Joe McDermott. Nancy DiVenere, President of Parent to Parent USA, will be our keynote speaker on Saturday and will talk about the history and power of parent to parent support. We are working with a wonderful Recreational Therapist, Mona McCullough, from Austin ISD, who is creating a schedule of activities for the child care rooms so the kids will have stay busy and have fun! And finally, St. Edward’s University has been wonderful to work with and we’re looking forward to some great fun and food.
Jeanine Pinner, our Outreach and Training Coordinator for the TxP2P Family to Family Health Care Information and Education Center, is busy scheduling trainings across the state for parents, parent groups, and professionals. If you have a parent group or staff that you think would benefit from a training on Community Resources , Medicaid Waiver Programs , Private Insurance Issues , Advocacy, Health Care Transition Process : Pediatric to Adult Care, Medical Home, Telling Your Story , Self-Determination , CARE Plan Notebooks or any similar topic, contact Jeanine 512-217-3558 or Jeanine@txp2p.org
Finally, we’re planning our 2nd Annual Vine 2 Wine Fundraiser on Thursday, October 5th, at the Lady Bird Johnson Wildflower Center in Austin. Last year it was a lovely evening event with wonderful food donated and prepared by Central Market-Westgate and wine donated by Republic Distributing Company. We had over 100 silent auction items, including large format wine, a UT bucket of snacks and football game tickets, original artwork, and autographed items. I know you cannot all participate but I hope some of you will be able to join us this year!

Advocacy, Inc. (AI) opened its first office in Texas in 1978, three years after Congress passed legislation requiring each state to have a program, funded by Congress, to provide “protection and advocacy” services for persons with developmental disabilities. Protection and advocacy programs are established as disability legal rights agencies and special education is one of many issues covered.
Over the years, Congress has added many responsibilities to protection and advocacy programs. Instead of serving only persons with developmental disabilities, Advocacy, Inc. now provides protection and advocacy services to: Persons with mental illness in institutions and in the community

• Persons with disabilities that do not meet the criteria of a developmental disability or mental health disability
• Persons who are clients, or want to be clients, of the State’s rehabilitation programs

Issues covered by AI in addition to special education include:

• Enforcement of the Americans with Disabilities Act
• Enforcement of the Fair Housing Act
• Right to be free of abuse or neglect, including improper physical restraint or seclusion
• Right to live in the community
• Access to community services
• Right to vote
• Access to Medicaid and Medicaid waiver services
• Access to assistive technology

As a way to manage the many areas of responsibility with limited resources, the AI Board of Directors has chosen to adopt priorities which limit the cases we will take. Priorities are developed after input from staff and from the public. Priority areas are those in which the Board sees the highest need, and in which they believe our intervention will help the individual(s) impacted, as well as others in similar situations. (For information about AI’s current priorities and our priority setting process, please go to the website: www.advocacyinc.org)
Advocacy, Inc. has grown to include six offices around the state, as well as eight smaller satellite offices. The regional offices cover all of the priorities and no one in a regional office works exclusively on special education.
The majority of our work in special education is individual case work provided by an attorney or advocate. The advocate or attorney working with you is juggling many other cases on a variety of issues. We also have staff working at the state level in the area of public policy. Many of our clients are families who come to our trainings and call our 1-800 phone numbers, but we also have clients in residential care facilities, foster care, and even a project in the Texas colonias. Our mandate requires us to do outreach to those who might not know about our services. In 2005, Advocacy, Inc. handled over 4,000 cases and responded to over 12,000 requests for information, materials, or referral.
No one on AI’s staff likes telling a parent they cannot take their case, go to their ARD meeting, or provide other services such as writing letters or making phone calls on behalf of their child. We try our best to provide written information or a referral to another program if we can’t take your case. When they can, staff will try to answer your question or strategize with you on the phone or sometimes in person. Staff may be available to conduct training for your parent organization.
Following are some tips for making the best use of Advocacy, Inc. services in the area of special education.

• Read the Parent Manual, “It’s a New IDEA.” It is currently available on our website (http://www.advocacyinc.org/handoutEducation.htm).

The answer to your question may be in there.

• Go to the Handouts section on our website at: (http://www.advocacyinc.org/handoutEducation.htm). The information you need might be there. For example, you can find an explanation of the Texas Agency’s complaints process and guidance on how to file a TEA complaint.
• If you have a question about a disciplinary action taken by a school district against a student with a disability, AI has developed an interactive online program that can answer your questions about the disciplinary process. Go to: http://www.advocacyinc.org/guides.
• So to the Texas Education Agency’s website. They have a lot of information about special education policies and procedures. You can also find a copy of the state rules and regulations governing special education on their website. Most of the information you might need can be accessed through the special education homepage (http://www.tea.state.tx.us/special.ed/). However, there is other useful information on the websites of other divisions of TEA. For example, information on TAKS, SDAA, LDAA can be found at the site of the Division of Student Assessment. There are also divisions for No Child Left Behind and Charter Schools, among others.
• Contact the Partners Resource Network (www.partnerstx.org) with your question about special education or to request training. They are funded specifically to perform this function. Smaller organizations such as Family to Family Network (www.familytofamilynework.org), Texas Parent to Parent (http://txp2p.org/) and the various Arc Chapters (www.thearcoftexas.org) can also answer many of your questions about special education. They also provide some parent training.
• Review AI’s current priorities in the area of Education (http://www.advocacyinc.org/prior2.htm) to see if your issue seems to fall within those priorities. If not, our services will be limited.
• Determine which of AI’s regions you live in (http://www.advocacyinc.org/contact.htm) and call that regional office. Though we do have a statewide intake number, it will save time if you call the correct office directly. Ask to talk to Intake staff. If you call someone else, perhaps someone you know, you will still have to talk to an Intake worker to take the required information. It saves everyone time if you talk to an Intake worker first. Intake hours are M-F, 9-12:30.
• Be as clear as you can be about the specific problem you are having for which you want AI’s assistance and have the information you might need to answer questions with you when you call. You may be asked questions such as the date of your child’s most recent evaluation or IEP.

I hope the above information is helpful. AI wants to help as many parents and students as possible. We can help more people if we are used to provide a service that other programs cannot provide or provide information you cannot find from another source.
If you have gained information, either from AI or someone else, that you have found useful in getting a good IEP for your child or for being an effective participant in an ARD meeting, we hope you will share that information with other parents in your community. Working together is the best way to have a positive impact on the 500,000 Texas students who receive special education services and their families.

The governor has the honor of appointing members to several key positions that affect people with disabilities on boards, councils, and advisory committees for state agencies and other entities. Texas Parent to Parent would like to ensure that parents are part of those committees. If you would like to serve on one of these boards, councils, or committees, we would like to help you get appointed to one that would be of interest to you. We can help you with the application and writing a letter of support for you appointment. We obviously cannot make any promises but we are willing to help. Here the positions, the number of positions available, and the date of the opening that were listed as of 06/12/06:

* Governor’s Committee on People with Disabilities; 6 positions; 2/1/06

* Early Childhood Intervention Advisory Council; 8 positions; 2/1/05

* Health Disparities Task Force; 1 position; 2/1/06

* Statewide Health Coordinating Council; 4 positions; 8/1/05

* Statewide Independent Living Council; 3 positions; 10/24/05

* Texas Office for the Prevention of Developmental Disabilities, Executive Committee; 1 position; 2/1/05

* Texas School for the Blind & Visually Impaired Governing Board; 3 positions; 1/31/05

You can find this list at http://www.governor.state.tx.us/divisions/appointments/current

Information on how to apply is at http://www.governor.state.tx.us/divisions/appointments/process The application itself is at http://www. governor.state.tx.us/divisions/appointments/application For a printed application or more information, you can contact us or the Governor’s Appointments Office, P.O. Box 12428, Austin, TX 78711; 512-463-1828 or fax to 512-475-2576.
The Governor recently appointed many individuals to a variety of councils and advisory bodies, some of who are connected to Texas Parent to Parent. So congratulations to the following:

Pat Alvarez , Austin; TxP2P Parent; 2002 Partner in Policymaking Graduate; appointed to the Rehabilitation Council of Texas
Opal Irvin , Dimebox; TxP2P Parent; 2002 Partners in Policymaking Graduate; and Frank McCamant, Austin, TxP2P Parent; appointed to the Texas Council on Autism and Pervasive Developmental Disorders
Christy Dees , Austin; TxP2P Parent; and Shewanda Williams, Houston; TxP2P Parent; 2005 Partner in Policymaking Graduate; appointed to Continuing Advisory Committee for Special Education

The 2006 hurricane season began June 1. Experience has shown that many Texans are not able to evacuate themselves because of physical and functional disabilities or medical conditions.  Other individuals may not be able to evacuate because they don't have transportation.
Local jurisdictions are planning their evacuation strategies now. They are seeking input on the number of people that may need assistance evacuating. The state has developed a special needs registry to assist local jurisdictions in estimating the need for transportation resources during an evacuation. Individuals that need assistance evacuating can register by calling 2-1-1.
Please, if you need help with your child or if you know someone else that may need assistance evacuating, call 2-1-1 today. Registration is free, it is easy, and it may save the life of a Texan with special needs.
Texas Department of Aging and Disability Services

Advocacy, Inc . has received a grant from the Texas Council for Developmental Disabilities which provides four community integration specialists to help individuals with disabilities affected by last year’s hurricanes in Houston, Dallas/Ft. Worth Metroplex, San Antonio, and Central Texas to analyze their options for living in the community in Texas or Louisiana. Another grant received by Advocacy, Inc. from Katrina Aid Today goes through October 2007 and is helping individuals with disabilities recover from the hurricane. Contact Advocacy, Inc. at 800-252-9108 (V/TDD) or 512-454-4816 (V/TDD) for more information.

In 2004, the Federal Government found that school districts in Texas were not providing ESY services required by the Individuals with Disabilities Education Act (IDEA), and directed the Texas Education Agency (TEA) to ensure that local school districts provide ESY services in compliance with the requirements of the law. The Southern Disability Law Center (SDLC) recently received a multi-year grant from the State Bar of Texas to improve the quality and availability of Extended School year (ESY) Services for children with disabilities in Texas . SDLC is a nonprofit legal services organization founded to protect and advance the legal rights of people with disabilities throughout the Gulf states . All of SDLC’s services are free. SCLC is currently assisting parents in Houston and San Antonio who want to file complaints with the TEA about the ESY services offered (or not offered) to their children.
The purpose of the ESY Project is to improve the overall quality of school services available for children with disabilities, not only during the summer, but during the traditional school year as well. The SDLC wants to make systemic improvements in the availability and quality of ESY services throughout the State, and through that, enhance the overall quality of special education services in Texas . Specific goals include:
To ensure that schools tell all parents of children with disabilities that their child may be eligible for ESY, and that parents are allowed to fully discuss ESY services with the ARD committee.

• To make sure schools consider all children with disabilities for ESY services, not just children with “certain” disabilities.
• To require schools to formulate ESY services based on the individual needs of the child, and not just enroll children in “one-size-fits-all” programs.
• To ensure that schools provide appropriate related services during ESY, such as counseling, speech, occupational and physical therapy.
• To make sure schools provide transportation for children to and from ESY programs.
• To ensure that schools make decisions about ESY services in a timely manner, so that parents may appeal to school’s decisions if they so choose.
• To ensure that children in ESY programs have access to their non-disabled peers, and are educated in the least restrictive environment.

Parents in the greater Houston and San Antonio areas who are concerned about their child’s access to appropriate ESY services can contact the SDLC for free advocacy services. Parents can talk to a lawyer on the SDLC staff and receive help in filing a written complaint with the TEA about ESY services. Interested parents may contact: Southern Disability Law Center, 705 Highland Avenue, Austin, TX 78703, or call toll free 1-877-499-0265

The Texas Center for Disability Studies at The University of Texas at Austin has produced a new guide on "Understanding Family Support and Opening Doors to the Future." The 26-page guide was created as a resource for all parents of children with disabilities, chronic illness or other health care needs in Texas. For example, the guide has lists of the state's seven Medicaid Waivers, other state-administered community care programs, parent groups, state agencies and state disability advocacy organizations. There is also information on natural supports, formal supports, the importance of living in a family, Medicaid, and how to navigate the service system. Funding for the guide was provided by The Trull Foundation of Palacios, Texas . The guide is online at http://tcds.edb.utexas.edu/documents/ut_tcds_family.pdf. o r contact them at 512-232-0740 or 800-828-7839.

Good afternoon, distinguished citizens of Central Texas! I have been a Girl Scout since kindergarten, moving to Austin in 2nd grade. Upon arriving in Austin, we formed a troop of thirteen girls who had just moved here from five countries. We are a neighborhood troop who blends cultures and religions, and public and private school calendars! Girl Scouts has enabled me to sleep with sharks, survive storms and speak to legislators. Let me share a few of the many stories.For Girl Scouts’ 85 th Anniversary celebration, our Council planned a parade down Congress Avenue. To prepare, we attended Clown School and visited a nursing home to practice clowning! At the parade, we walked single-file down Congress Avenue, with a long clothesline that held hilarious laundry. As the parade began, it started raining! Our clown make up left our faces and the laundry became heavy with water. The spectators fled and so we went out for hot chocolate! :) For one of our many camping trips, we camped in a state park south of San Antonio . We had a great night and a fun morning. Suddenly a wall of black clouds moved in, followed by lightening, torrential rains and hail. Are you starting to notice a theme here? The park police told us to crouch in ditches if we saw a tornado - the ditches with the alligator signs, and the lightening! We were amazed by the force of a Texas storm! Our tents, food and gear were destroyed. The local stores were closed until Monday, so we came home! After all we were only 8 years old! :)We also took great trips, visiting Space Center Houston and the Texas State Aquarium to sleep in front of the shark tank! :)
In middle school we increased our level of service to the community. We visited nursing homes to perform scenes from The Music Man, Annie and Cats. We hosted badge days for Girl Scouts across Austin , volunteered at Austin ’s Trail of Lights, and filled backpacks with school supplies for foster children.
In high school, there was greater emphasis on leadership and career exploration. We continually got to meet and work with lots of inspiring adults. For example, our troop visited St. Edwards University , where Dr. Quinn taught us to regenerate cauliflower from a single cell. We learned about biology careers and had a deep discussion about the ethics of chemical companies selling grain to third world countries which can’t produce offspring crops.
As a troop we earned our Silver Award, by creating an Ability Awareness Fair for the general public. Our fair featured about 100 stations where you were assigned a disability, and then given a game or craft to try. We also asked Ballet Austin to teach wheelchair ballet, plus I demonstrated my voice dictation software.
As we planned and implemented this fair, our troop learned the effect one person can have on a master schedule. We also learned how to collaborate with outside organizations. After our fair, which about 2,000 people attended, we were told that we had become a project coordination team, similar to one in a corporation :)
Next, came our Gold Awards which were more individual. For example, Alyssa built bat houses for Bat Conservation International. Brandy, already a horse woman, held a horse show for children who take therapeutic riding. Kelsey furnished a babysitting center at a YMCA.
My next story leads up to how I chose my Gold Award Project! In 9 th grade, I testified to our Texas Legislature about the needs of children who have disabilities. The situation, simplified a lot, is that our state institutions are becoming empty, because today’s families want to raise their children away from institutions and in communities. So Texas has 100,000 children who, instead, need a community model of support. So I told my story to the legislature, which is: “Why would I take 8 advanced placement classes and then move into an institution for a daily bath? Wouldn’t I want help in my home or college dorm, to continue living the full life I lead?” :)
After testifying about this, I was asked to speak to other groups about self-advocacy. I was invited to help the Texas Youth Leadership Forum, with a leadership conference. I was able to easily join a team of adults to create this conference, because we learned how to work as a group during our fair.
Next, I was appointed to a federal committee called the National Council on Disability, as their high school representative! We communicate with youth across the USA, plus we call on members of Congress, and we write an annual paper to be submitted to Congress. On this committee it is equally important to advocate for people with all types of disabilities. My experience of being in such a diverse Girl Scout troop, prepared me well for this committee. :)
Next, at a recent 15 th anniversary celebration of the Americans with Disabilities Act, held at the Kennedy Center , I was invited to help President George Herbert Walker Bush, give awards, to people who work for the rights of persons with disabilities. :)
After these experiences, when it became time to choose my Gold Award Project, I decided to teach people how to testify to their Legislature. I held three classes, and then we had a mock hearing, in a Senate Hearing Room at the Texas Capitol. :) I invited legislative staff to listen and give us pointers. As my project completed, I was appointed to the Texas Children’s Policy Council, by Commissioner Hawkins. :) Also, I was honored as a Young Woman of Distinction, at the 2005 Girl Scout National Convention in Atlanta, where they honored 25 girls in the United States for their Gold projects, two from the Lone Star Council! :)
Our Girl Scout troop is about to graduate, ten of us who’ve been Girl Scouts since kindergarten, and 2 foreign exchange students from Germany ! :) Our last event will be a slumber party, here at this hotel, after finals are over. Isn’t it scandalous to sleep here and then drive over to our last day of high school?
I’ve shared lots of stories, but believe me I could share lots more. I have had thirteen fantastic years in Girl Scouts and I hope to have many, many more! :) Thank you! :)

As the Program Director for the Fathers Network, I have spent the past seventeen years crisscrossing the country helping set up support groups for fathers of children with special needs. I have visited thirty-eight states and completed more than 400 trainings. I have experienced the bitter cold of Maine , the tropical climes of Hawaii , and the scorching heat of Texas . It has been a grand time, both in terms of seeing much of this country and the diverse people who inhabit it, but also in meeting men who are endeavoring to be the best pos­sible dads for their children with disabling conditions or chronic illness. I often have been touched and moved to tears hearing the stories these men share with each other. When I reflect on these travels, I find poignant images and memories full of wonder and delight, all saying something important about fathers and their desire to be competent, concerned caretakers. I remember two men who came to the first meeting of a fathers group and were surprised finding each other at such a gathering. With amazement and some embarrassment they discovered each had a child with a disability - amazed because they had worked together for the past four years but had never shared this "secret." I have seen and heard variations on this story almost everywhere I go. What stands out is the isolation so many men experience, afraid to share their special world, fearful of being misunderstood and unwilling to reach out to others for help. The old male models of manliness - being in control, self-sufficient, capable of handling all problems without asking for help - die slowly. To finally openly talk about one's child, to know we all have the same fears, angers, frustrations as well as the joys of personal accomplishment, is an incredibly powerful experience. I routinely ask men why they come to such meetings. Often the answer is, "my wife wanted me to," or "I came because I was told to." When I ask them again at the end of the session the simple answer is, "I came to share my experiences and feelings with other men of similar backgrounds." The isolation slips away as the commonalties become supremely evident.
One way to deal with our pain is to deny we have it. A glib "I'm fine," or "everything's great" masks the confusion and concern men often feel regarding their families and the struggles they are going through. I think of the man who installed my storm windows. He seemed particularly angry, and we made little eye contact. Upon completing the job he asked to use a phone in my office. On the desk was a copy of a book about families raising children with special needs. With a sudden blurt he asked me, "What do you know about disabled kids?" Upon telling him about my job, he unleashed twenty minutes of unbridled rage about the past fifteen months of his life since his special needs child was born. He complained bitterly about the medical costs, the stresses he was experiencing with his wife, and the loss of a job. It was evident this was the first time he had openly shared these thoughts with anyone else. What was also evident behind the frustration and anger was the immense love and concern he felt for his child. Not daring to interrupt, I let him share his stories, and when through, I told him about groups of men who meet to share similar feelings and help support each other through their struggles. He was dumfounded such groups existed. Like so many other men, he needed a place to vent his frustrations, share his fears and joys and reach out for assistance. With men so often what is outwardly shown is not what is going on inside; men need safe places to be accepted and understood.
I am continually struck by how a group of men from disparate backgrounds can immediately connect with each other. In a fathers' group one finds mechanics and computer salesmen, loggers and professors, servicemen and engineers. I have often cringed a bit when first starting a session, quietly asking myself how these men will ever find something in common. I particularly remember one man who was absolutely silent the entire two-hour session; he seemed utterly de­tached from what was going on, and no amount of coaxing could elicit a comment. He seemed supremely bored by what was happening. As we were about to finish he finally looked up and began to talk about his child, haltingly at first but increasingly confident as he went on. He made it clear the session had been very special to him and that he intended to return the next time. Obviously I had misjudged him; I could only remark later to the group leaders how much camaraderie among the men was built in such a short period of time, and that we all have our own unique ways of sharing who we are. While the men seem so very different, in reality they are so very much alike. Underneath the tough exterior is a tenderness wanting to come out and be acknowledged. Their children bond them together.
I would be remiss not to comment about the laughter, the good humor and enjoyment the men bring to discussions regarding their children. The first steps at age five, the mastering of a feeding session or a diaper change, the joy in taking a son swimming on a Saturday afternoon, the relief of making it through a child's heart surgery, and the chance to take a daughter on a camping trip - these are the stories that make our times together such a pleasure. The playful kidding with each other, the earthiness of discussing who had the last vasectomy, the exchanging of cigars with the birth of a child, and the preparation of a spaghetti dinner for the wives - all are done with great gusto; rarely have I left a session feeling down or overwhelmed by sadness. For dads of special needs children, success comes in different ways - slow and measured, hopeful after what had seemed so hopeless. For most dads the child ultimately becomes a gift of love, a teacher. As one father proclaimed, "I feel proud of her [his daughter] and even proud of myself - that I'm a damn good father. The irony is, I probably wouldn't have been if I didn't have a special needs child."
There is much written today about fathers being "derelict" in their fatherly responsibilities. These men have taught me to look past such stereotypes, and to see men working with great diligence to be superb fathers - caretakers filled with compassion and sensitivity. It has been a privilege to share this endeavor with so many men. I have learned much and I thank them all.
James May, Program Director (retired)
Washington State Fathers Network
Greg Schell, Director
16120 N.E. Eighth Street
Bellevue, WA 98008
425.747.4004, ext. #4286
425.747.1069
E-mail: jmay@seanet.com & web page: www.fathersnetwork.org
Updated and reprinted from “Fathers’ Voices” column, Exceptional Parent magazine, October, 1993. (updated May, 2002). Copy or duplicate only with Mr. May's permission, jmay@seanet.com

Thirty-six Texans graduated from the Texas Council for Developmental Disabilities leadership and advocacy training program, Partners in Policymaking, on April 29. This brings the total number of graduates over the last 15 years to 608 Texans. Congratulations to the new Partners: Kristen Cox, El Paso, TxP2P Parent; Margaret Crittendon, Wichita Falls; Dianne Douzart, Tyler; David Forbis, Haltom City; Kristen Foret, League City, TxP2P Parent; Laurie Garza, Allen; Ivy Goldstein, Austin, TxP2P Volunteer; Angela Gonzalez, San Antonio, TxP2P Volunteer; Shea Hales, Corpus Christi; Adriana Haro, Laredo; Bertha Hernandez, El Cenzio; Guadalupe Hernandez, Floresville; Paul Houston, Jersey Village; Katy Hull, Austin; Gerard Jimenez, Austin, TxP2P parent; Bertha Jones, Tyler; Anita Karney, Waco, TxP2P Parent; Michelle Luper, Port Lavaca; Joanne Mayes, Hungerford; Jennifer Osborne, Nocano; Sonia Penn, San Antonio, TxP2P Volunteer; Jennifer Puckett, Longview; Michelle Robbins, El Paso; Jeane Rogers, Kingwood; Amanda Sanchez, El Paso; Priscilla Schramek, San Antonio, Marieli Sierra, Kingwood; Joel Silos, New Braunfels, TxP2P Parent; Amy Smith, Weatherford, TxP2P Parent; Kristin Tassin, Missouri City; Tracey Tatum, Nederland; Jennifer Vincent, La Porte, TxP2P Parent; Taylor Wiginton, Bedford; Eric Williams, Austin; Chris Wonnacott, Longview; Candi Yarbrough, Scurry.

To learn more about the relationship between individual with disabilities and their adult siblings, the National Sibling Consortium and the Vanderbilt Kennedy Center for Research on Human Development has created the “Adult Sibling Questionnaire.” The survey is for anyone age 18 or over with a sister or brother with disabilities. You can find the questionnaire online at https://kc.vanderbilt.edu/Family Research . Paper copies are available by calling toll-free to 888-322-5339 or sending your contact information to FamilyResearch@vanderbilt.edu

New Donors:
Memory L. Keeler

Previous Donors:
Cathy & Steve Beard
Molly & Mef McKnight
Knights of Columbus #10836 in honor of Jessica Geisinger

Special Thanks to:
University Federal Credit Union in honor of Cassie, Debbie & Larry Burt