The movement for community-based services in Texas has just gotten stronger! A new grass-roots parent movement, Texas Families Unite, has arrived and has a rally planned at the Capitol for Monday, March 14 th at noon . I hope some of you receive this newsletter in time to attend and have your voice heard. These parents are basically us; they are just like you and me, struggling with the everyday needs of our children with disabilities or special health care needs. Some of them are graduates of Partners in Policymaking, some are part of TxP2P, and some do not have an affiliation with any group but heard about the effort and joined because they are tired of waiting for services in Texas . The really incredible part of the whole movement is that it is a true grass-roots effort – there is no sponsoring group or agency – they are just parents! The following is from their press release: Texas Families Unite to keep their loved ones in their homes and their families together. Event: Families from all over the state of Texas, caring for loved ones who have a disability or special need, will unite at the Texas State Capitol, dressed in black, to advocate for supports and services in their own homes, not in disability-facilities (i.e. state schools or nursing homes). These families are tired of waiting 10-15 years for services for their loved ones and want the waiting lists reduced by half, immediately. The event is a grass-roots effort organized by families, for families of people who have disabilities. When: Monday, March 14, 2005 ; 1:00 p.m. – 3:00 p.m. Families will visit legislators inside the Capitol; 3:00 p.m. – 4:00 p.m. Families will rally on the South Steps of the Capitol.

Background: Texas families caring for loved ones with disabilities have 1 of 2 choices: 1) leave their loved one in a disability-facility and access care immediately; or 2) care for their loved one in their own home and wait 10-15 years for services. Currently, there are more than 10,000 Texans on a waiting list (28,000 are children). There is no waiting list for entry into a Texas state school (disability-facility) because families in Texas want their children in their homes, not in facilities. However, waiting years for services has: forced families to split up so their child can be eligible for medical care, forced one-time professionals to give up their jobs/careers/businesses to become full-time caregivers, and many are living with no health insurance at all. Families are tired of waiting years for services in Texas .

To learn more about Texas Families Unite, contact Elyse Luke at elyseluke@hotmail.com or Pat Alvarez at 512-252-8170.

Please contact your Representatives and Senators and let them know that you matter, that your child matters, please let them know what you need, please say to them on behalf of your family and your child….www.capitol.state.tx.us

I am here . . .

For talking points or assistance on who to write to on different committees, you can contact me at MichelleMGuppy@yahoo.com

I am here.

I am in the hospital watching my child struggle to survive. 

My joy at her accomplishments despite so many challenges, equally matched by the fear that she might not overcome this one. 

I am worried, but I am here.

I am here.

I am a child with brown eyes who loves to swing.  I love to jump on the trampoline and listen to music.  I love to smile, laugh, and be tickled.

But even though I cannot read or write or talk,  I am here. 

I am here.

I am working my second job of the day just so I can afford to pay for my son’s medical care because my company doesn’t offer insurance.   

I miss my family,  I am here.

I am here.

In a classroom at the far end of the school where I won’t disturb anyone.  I act out because I am bored.  I am unmotivated because no one thinks that I matter because I have disabilities.  I want to learn with other students.  I want them to learn from me.

I am lonely, and I am here.

I am here.

I am in my car driving my child to therapy while my other children do their homework and eat their dinner in the back seat.  If I could get the needed support services in my home or at my child’s school, our life would not be this crazy.

I am exhausted, but I am here.

I am here.

Sitting at home wondering why I worked so hard in school to prove to everyone that I could graduate despite my obstacles.   All I ever wanted was a job and the chance to live my life as a productive citizen.

I am unemployed, but I am here.

I am here.

My college degree and career on hold to care for my son who has multiple disabilities.  My Good Housekeeping magazines replaced with “Disability Law” – as I try to learn all I can to ensure that my son is not discriminated against.

I am up all night reading, searching, studying…   I am here.

I am here.

Sitting in my wheelchair waiting for an employee to feed me.  Listening to what they say about me, assuming that I don’t understand.   My parents were too frail to care for me at home anymore without help or funding; of which there was neither.  They had no other choice or option. 

I am scared and I want to go home.   I am here.

I am here.

More mature than most of my friends because of the sacrifices our family has had to make.  Determined to do what I can to make this world a better place for people like my sister who have disabilities.

I am the generation who must change things that you did not.  I am here.

I am here.

I am Martha, Mary, Brandon, and Billy.  I have blue eyes, brown eyes, long hair, and curly hair.

I have Down’s Syndrome, Autism, Cerebral Palsy, and Mental Retardation.

When you consider legislation that affects me, please remember me.

I am here.

We are here.

We are your neighbors, your constituents, and your future.  We are mothers, fathers, sisters, and brothers.  We are individuals with disabilities who have hopes, fears, and dreams.  We are their parents who want for them opportunities, choices, and funding.

When you consider legislation that affects us, please remember us.

We are here.

Advocacy sounds like an intimidating word to me.  What does it mean?  According to Webster’s Dictionary - advocacy means “supporting a cause.”  My cause just happens to be my child who has Bipolar Disorder.  To me, advocacy means sharing information with others about what I know.  Knowledge is power, to share that knowledge is like passing on a part of my soul.  Do you need a degree or special training to advocate?  No, you just have to have the courage to share your story no matter what the price.  We all have a story to tell based on our experiences.  Does that mean I beat the Bipolar drum loudly in society everywhere I go? No, I selectively share what I know only to those who have a genuine interest or who walk on the same journey.  To me the bipolar journey is an unwritten poem, or song, or an unwritten book.  The ability to advocate lies within us all, after all we are our children’s voices; their lives are the song that needs to be heard by others.   Advocate comes from the Latin word advocatus which means “someone who has been called in to help.”  For whatever reasons, if we are on this journey,we have all been called in to help and we all have a story to tell.  So my message is this: have the courage and take the time to share.  I encourage you to advocate, to share the unwritten book that is your lives.

There are things that advocates should do:

• Show that you respect their time and recognize it is as valuable as yours
• Be clear and concise in your communications
• Be specific about what you want them to do
• Show an interest in other issues on which they are working.
• Tell both sides of an issue so that they can anticipate the opposition.
• Compliment them if they have done an effective job on anything­
• Get to know the legislator's aides
• Use information that is accurate. Information that is vague or not true will only tell them you cannot be trusted.
• If you don't know the answer to one of their questions, don't lie. Tell them you will get them the information, and then be sure to do it. Be sure to follow up with a thank you. If you promise to do something (send information or call them), be sure to do it

There are also things that advocates do NOT want to do:

• Do not confront or challenge your legislator
• Do not take too long when meeting with them or talking to them at an event.
• Do not lecture your legislator. They will respond better if you have a clear, concise message to leave them with.

In Texas , all involved in the disability world, parents, self-advocates, advocacy and disability agencies, and even some legislators are very concerned about the long waiting lists for community-based services. Advocacy, Inc. and The Arc of Texas have even filed a lawsuit against the state over the waiting lists. Here’s the statistics that have everyone upset about:

HCS (Home & Community-Based Services) Waiver: 25,543 total (9,112 are children); CLASS (Community Living Assistance and Support Services): 12,495 total (10,287 are children); MDCP (Medically Dependent Children Program): 7,763 total (7,733 are children); CBA (Community Based Alternatives:) 66,210 total (465 are children); CSHCN (Children with Special Health Care Needs): 280 children; IHFS (In-Home and Family Support Services): 19,777 total (732 are children). Total: 132,068 for all 6 waiting lists (28,609 are children).

Some will now have to wait between 10 and 15 years to receive services.

From Health & Human Services Commission, TX Dept. Of Health, July 31, 2004

Partners in Policymaking is a leadership training program for adults with developmental disabilities and parents of young children with developmental disabilities. Partners learn about current disability issues and state-of-the-art practices and become familiar with the policymaking and legislative process at the local, state, and federal levels. The goal is for participants to gain the competencies necessary to become advocates who can create positive changes in today’s world.

Partners attend eight, two-day training sessions, which begin at noon on Friday and conclude by 3:30 p.m. on Saturday. National and state leaders in the disability movement present various topics. All sessions are in Houston and Austin. Attendance of all eight sessions is mandatory and Partners are expected to complete assignments between session and commit to one major project after graduation, such as serving an internship with a public official, organizing town meetings, coordinating a parent or self-advocacy network, etc.

Partners in Policymaking is funded by the Texas Council for Developmental Disabilities through the Family to Family Network. This training program is free to participants selected to attend. This includes registration for eight sessions, lodging, transportation, and meals, all arranged by Partners in Policymaking staff.

Call the Texas Council for Developmental Disabilities at 800-262-0334 or 512-437-5432 to obtain an application. Or find the application on their website at www.txddc.state.tx.us/menu/fset_gppr_part.asp in English and Spanish. Or contact the coordinator, Laura Buckner, at 866-291-1990 or Txpartners@cablelynx.com Also visit the website www.familytofamilynetwork.org for more information.

For those who have not yet been able to attend a Partners in Policymaking, this is a wonderful opportunity to experience a small portion of this wonderful program.
“Making Your Case”, is a self-study course designed to help people with developmental disabilities and their families create positive change through advocacy.  The design and development of this e-learning course was financed in part by grant number G-0201MNBS24 and 90DDF0056 from the Department of Health and Human Services, Administration on Developmental Disabilities, under the provisions of Public Law 106-402.
This course has been created to give you the critical skills you need to make a difference through advocacy. When you complete this course, you will be able to:

• Tell your story in writing and in person; 
• Identify the policymakers who can help bring about the changes you need; 
• Write effective letters and e-mails; 
• Conduct productive meetings with policymakers; 
• Give effective testimony and answer questions; and 
• Organize with others to tackle community issues.

Ready to begin?  Click TAKE THE COURSE and you'll be on your way to Making Your Case!
http://www.partnersinpolicymaking.com/makingyourcase/

While looking through one of the many newsletters received at the office of TxP2P, I came across an article by a mom named Kim Lynch who was explaining Cystic Fibrosis to young children. I found comfort in the simple way she was able to describe such a complex issue (“why I am not like other children”) that many of us have struggled with over the years. Kim says “I always use the puzzle analogy. Each child is created with lots of puzzle pieces. The pieces come from Mom and Dad, and even other people in the family. Sometimes you can see “pieces” of others in yourself.” My two oldest daughters blue eyes are puzzle pieces that came from me while my youngest daughter’s brown eyes are puzzle pieces from my Grandmother. Their various shades of brown hair are pieces from their father and even though they all three share the same father, the pieces are a little different in each of them. Kim continues to say that “sometimes, all of the pieces don’t fit together just right, and sometimes a piece or two can be missing. It can be the piece that helps you walk like everybody else and sometimes it‘s the piece that makes you nice (not everyone has that piece, what a shame).” As children age and abilities develop, words can be changed to describe this analogy - sort of like the 8 piece puzzle becomes the 24 piece puzzle and before you know it, you’re talking 100 piece puzzles! Unfortunately, there is no way to make the “puzzle” easy to understand, but a simple explanation is usually all you need for many years according to Kim Lynch of the Cystic-L List.

There once was a bunch of tiny frogs . . . who arranged a running competition. The goal was to reach the top of a very high tower.
A big crowd had gathered around the tower to see the race and cheer on the contestants . . . the race began . . .

Honestly: No one in crowd really believed that the tiny frogs would reach the top of the tower. You heard statements such as: "Oh, WAY too difficult!!" They will NEVER make it to the top." or: "Not a chance that they will succeed. The tower is too high!"

The tiny frogs began collapsing. One by one...Except for those, who in a fresh tempo, were climbing higher and higher . . . 

The crowd continued to yell, "It is too difficult!!! No one will make it!" 

More tiny frogs got tired and gave up . . . but ONE continued higher and higher and higher . . . This one wouldn't give up!
At the end everyone else had given up climbing the tower. Except for the one tiny frog who, after a big effort, was the only one who reached the top!

THEN all of the other tiny frogs naturally wanted to know how this one frog managed to do it?

A contestant asked the tiny frog how he had found the strength to succeed and reach the goal.
It turned out . . . that the winner was DEAF!!!!
The wisdom of this story is:
Never listen to other people's tendencies to be negative or pessimistic because they take your most wonderful dreams and wishes away from you -- the ones you have in your heart!
Always think of the power words have. Because everything you hear and read will affect your actions!
Therefore: ALWAYS be . . . POSITIVE and above all: Be DEAF when people tell YOU that you cannot fulfill your dreams!

Would you like information on laws and legislation affecting children with special needs? Do you have questions about autism, Down syndrome or other disabilities? Would you like books to read to children to help answer their questions about your child with special needs? The ECI Library can help! Texas Early Childhood Intervention (ECI) is a statewide system of services for families of infants and toddlers with disabilities and developmental delays. ECI maintains the ECI Library to help families, caregivers and professionals access current information about children with disabilities and delays. The library includes books, video tapes, and other materials that address parenting, intervention strategies, laws and legislation, transition, and many other topics. Any Texas resident may borrow items from the library. You can visit the library to borrow materials or search the library catalog via the Internet and have items sent to you. The only cost is the cost of returning the materials.

The ECI Collection is located in the Department of State Health Services (DSHS) Audiovisual Library. In addition to the ECI Collection, you may borrow materials from the DSHS Audiovisual Library and the Rehabilitation Services Library collection. Upon request, a Medical and Research Librarian will assist you with searches on specific topics of interest.

The library is located at:

Department of State Health Services
Audiovisual Library, Warehouse Building, Room 115,
1111 North Loop Blvd.
Austin , TX 78756 .

To contact a librarian call (512) 458-7260, toll-free 1-888-963-7111 ext. 7260, fax (512) 458- 7474 or email avlibrary@dshs.state.tx.us.

To order library materials online, or to find out more about the library, go to the Department of Assistive and Rehabilitative Services website at www.dars.state.tx.us click on “Early Childhood Intervention Services”, and click on “Resources.”

In addition to the library collection, ECI also offers free Developmental Brochures and Growth Charts, in English and Spanish, that you can order in quantity and share with other families to tell them about ECI. For more information, to make a referral, or to order brochures, call the ECI Care Line, 1-800-250-2246.

VSA arts of Texas is creating a society where people with disabilities can learn through, participate in, and enjoy the arts. And we want you to be a part of the fun!

Our programs include Start With the Arts, professional development training for early childhhood educators in inclusive arts education; ArtWorks, career development for adult artists with disabilities; Accessible Arts, cultural access trainings for arts organizations; and various art exhibits and festivals to work toward a goal of arts for every Texas child, every day!

Call for Art: Join VSA arts to discover what “Art is . . . “ by submitting a two- or three-dimensional work of art that reflects your perspective of what art is and why it is important. In May of 2005, the VSA arts affiliates in each state will select two pieces of art from these submissions to receive a certificate of recognition. The two selected artists will be eligible to participate in a national tour exhibit that will debut in Washington , D.C. Of the total artists selected for exhibit, five artists will be guests for the opening exhibit and reception.

For more information, contact April Sullivan, Manager of Public Programs, at 512-454-9912, 512-454-6298 (tty), or april@vsatx.org or look at our website at www.vsatx.orgThe deadline in March 31, 2005.

Do you know a child with cerebral palsy, spina bifida, or poor motor coordination? Would you like to give this deserving youngster an opportunity to ride his own tricycle just like other neighbor children? Would you like to see him become stronger while strengthening his limbs?

For years, the AmTryke® therapeutic tricycle has benefited and delighted children with disabilities. It has allowed them to experience the pleasure of riding freely even among peers without disabilities. Physical therapists acknowledge the AmTryke® tricycle's therapeutic benefits to patients, citing improved motor skills and strength development. In fact, the AmTryke® tricycle was inspired by a therapist.

National AMBUCS™, Inc. has a "wish list" of children in need of an AmTryke® therapeutic tricycle.

If interested, contact: http://www.ambucs.org
They will put you on a waiting list, and then when funds are available, an adapted tricycle will be shipped to your house. You must have a Physical Therapist to help you fill out the short paperwork.

Without the great folks listed below, TxP2P would not be where we are today! Thank you so much for your support and belief in our mission!!

Up to $99:
Dr. Louis Appel
Cathy & Steve Beard Family – in honor of Hannah Brod
Hong & Delbert Brod
Teresa & Andrew Coffman
Brady Coleman
Ann & Jerry Cotter – in honor of Cassie & Mila Burt
Jerry Consentino – in memory of Helen Rellah
Barbara & Gerald Convery, May & Tom Convery, Julia & John Geisinger, Lavonne McManus, Bridget Schoonover – in honor of Jessica Geisinger
Christopher M. Currin
Gretchen Davis
Kathy & Joe Derdzinski
Maureen DiMare – in honor of Joel DiMare
Carol & Robert Donathan
Esmeralda Downey- in honor of Alexis J. Montejano
Janice Drost
Marsha B. Early – in honor of Amy M. Early
Ivy & David Goldstein
Barbara & Stan Grupinski
Jeane Johnson
Kay Lambert
Cecilia & Ron Lehman
Margaret Menicucci & Michael Whellan
Mary Jo Miller
Dr. William Moran
Elliott Naishtat, State Representative
Jenifer & Craig Neffendorf
Lester Pennington – in honor of Brenna Prior
Nancy Post
Susan & Tom Prior, Board Member, Chair
Chris Riley
Pat & Chuck Royston
Mimi Smith
Speech Kids & Marvie Ellis
Stepping Stone Schools & Rhonda Paver
Madeline Sutherland-Meier & Richard Meier
Val & Gary Sutorius, Past Board Member
Evelyn Tolentino – in honor of Nikki Tolentino
Susan Vaughan
Patricia & Eric Vincent
Judy & Skelly Warren, Marjorie S. Warren – in honor of Laura J. Warren
Chava F. White

Between $100 & $249:
Cameron Babberney, RMT
Debbie & Larry Burt, Board Member, Chair-Elect
Denise Brady, Board Member, Secretary
Mary & Cameron Brown
James Carroll, III, Ph.D. – in honor of Cassie & Mila Burt
Irma J. Jones – in honor of Jessica Geisinger
Kathy Cunningham
Susan & Robert de Rose
Martha Diase & Ron Ayer
Roger W. Jeffery, Jr.
John Marcus
Molly & Mef McKnight – in honor of the Geisinger Family
Marilyn Rogers
Ashley & Hector Sanchez
Kimberly & Brad Schlooser – in honor of the Prior Family
Madeline & Bill Sutherland
Charlotte & Max Wilhite
Beth Zimpelman & Nix O. Bodden – in honor of Yates Barreda

Between $250 & $499:
Yates, Bill, & Katy Barreda
Jasper D. Carbajal
Tammy T. Counts
Russell E. Haynes
Hill Dermaceuticals, Inc. & Maria E. Darnell
Kathryn R. McDuffie
Michael D. Shanklin
Mark S. Weaver, D.D.S.

Between $500 & $999:
Chase Education First & Robert Hogeda – in honor of Milla Burt
Jan & Charlie DiMare, Past Board Members
Patty & Joe Geisinger
Higher Education Servicing Corporation & Jose Guerrero
Jean & James Moore
St. John Neumann Knights of Columbus Council #10836
University Federal Credit Union & Rhonda Summerbell – in honor of Milla Burt

$1000 & over:
F.A.I.T.H. Home
Reit Management & Research, LLC
Jean M. Skelly – in honor of Laura J. Warren
Julia M. Wilkinson

Funders:
Champions for Progress, University of Utah
ForeSight Foundation
PacifiCare Foundation
Texas Council for Developmental Disabilities

Goals are statements that clearly indicate and define an area of learning or development. A goal statement does not have to be observable but it should be limited in its scope.

When setting a goal for a student we should consider:

The age of the student
The present level of performance in the area of learning
The disability or limitations the student has to cope with

Here are some sample goal statements:

Acceptable (Concise)
Read with comprehension
Develop singing skills
Learn to swim
Improve writing skills
Increase fine motor control
Calculate with decimals
Acquire basic carpentry skills
Improve public speaking
Improve research skills
Reduce aggressive behavior
Improve test-taking skills
Unacceptable (too broad)
Improve his schoolwork
Show progress in school subjects
Increase in development
Learn more about the world
Became a better person
Behave himself
Develop normal attitudes
Study hard
Pay attention in school
Show interest in class
Learn her math

Avoid wording which describes what will be done to or for the student. The following statements are not appropriate as part of a goal; they do not describe student behavior:

Johnny will be taught to . . .
Help in reading will be provided . . .
Andy will be counseled to . . .

Why did the public school say that your child doesn’t qualify for any services when she spends hours on her homework? Why doesn’t she get better grades? Could she have a learning disability? What can you do for her?

Everyone struggles with learning at one time or another. Just because your child isn’t eligible for special education services or 504 Plan doesn’t mean her problems aren’t real. If she was assessed by the public school and didn’t qualify for any special services, the good news is that her test scores show she’s learning. Be sure to compliment her about the strengths and achievements her testing showed. Encourage her to stay motivated because that is the key to success.

A child may feel she’s the only one in the class who doesn’t understand, has to work hard, or spends hours on homework. Check with the teacher or other parents to see if this is realistic. Examine your own expectations for her performance and decide whether she is putting unrealistic demands on herself. Let her know how proud you are of her hard work and help her find ways to ease up on self expectations. Remind her that no one is perfect.

Certain grade level transitions create a jump in expectations of kids. For example, the transition to middle school can place a strain on all kids, but if a child already has problems organizing, this transition becomes exceptionally stressful. Since academic stress points can be anticipated, you can prepare your child with the necessary support and structure ahead of time.

It is important to let her know that you believe in her and recognize her efforts. She needs to see you are “in her corner” – there to listen, provide support and guidance, and seek help for her.

Remember that these struggles are only a part of the special and unique person she is. As her parent, you will want to find ways to reinforce instruction, keep her motivated, lessen the pressure, and celebrate her talents.
Help her set realistic expectations for herself.
Let her know that it’s OK to ask for help when she doesn’t get a new concept or understand directions.
Meet with her teachers and make a plan of how you can work together to help her.
Help her to organize her materials and develop a plan for effective studying.
Find ways to help her with her homework.
If necessary, provide academic support programs outside of school hours, such as tutoring or peer study groups.
If necessary to help her deal with anxiety and unrealistic expectations, get some counseling.
Identify her strengths and interests and encourage her to continue to build them.

It’s just a little over a month away! We’re all very excited and are still busy making plans. Here’s the latest on our Parent Stipends for Dorm Room Expenses, Friday Night Family Gathering, Saturday Night Keynote Speaker, Sunday classes, child care, and Continuing Education Units. If you have already registered for the conference and any of these updates or changes affect your registration information, please contact Laura at Laura@txp2p.org or Susan at tprior@swbell.net with the changes you would like to make. We apologize for any inconvenience these changes may cause you and hope our 2 nd Annual Conference will be fully planned before the registration form goes out. We are still on the learning curve where conferences are concerned . . .

Parent/Consumer Stipends: We have recently received funding from the Texas Council for Developmental Disabilities to pay for the dorm rooms for families of children with disabilities. This stipend will be in the form of a reimbursement after the conference. You will have to fill out a request for the stipend at the registration table. If this causes a hardship for you, contact Laura at Laura@txp2p.org and we’ll work something out. Also a quick note that was not on the registration form, if you are using the dorm rooms, linens are not included – you will need to provide your own sheets, pillows, blankets, and towels.

Friday Night Magic Family Gathering: We will have dinner at 6:00 p.m. appropriate for the entire family. At 7:00 p.m., we’ll have a magic show by “ The Fantastic Kent Cummins!” from the Magic Camp in Austin. Please let us know if you plan on attending this event and purchase a meal ticket for each family member who will be eating with us.

Saturday Night Keynote Speaker: We have received funding from the Department of Assistive and Rehabilitative Services Division of Early Childhood Intervention for a keynote speaker. Nancy Shugart will join us Saturday night at 7:00 p.m. after dinner. Nancy lost 90% of her vision at an early age but worked hard to attend and graduate with a Bachelor’s and Masters of Music and went on to a 21-year career as a teacher in Austin ISD. She now spends her time speaking to students with disabilities and other special needs, their parents, and schools in order to inspire them to become independent and self-determined individuals. You might enjoy her website: www.provethemwrong.com

Sunday Classes: We plan to have four sessions on Sunday starting at 9:00 a.m. and stopping at 12:00 p.m. at which time lunch will be available at the cafeteria before you head home. We’ll have an updated list of pamperers and therapists at the opening sessions on Friday and Saturday. Pampering: We have invited chair massage therapists, manicurists/pedicurists, and facial/make-over consultants to provide a little pampering for anyone interested. Transitions: We have invited parent volunteers to act as facilitators and to meet with parents whose children are making or are about to make a transition between: Early Childhood Intervention (ECI) Program to a Preschool Program for Children with Disabilities (PPCD) or Early Childhood (EC) classroom in a local elementary school (this transition is made at age 3); a PPCD or EC classroom to Kindergarten or a self-contained classroom; an Elementary school to Middle School; Middle School to High School; and finally, High School to work/college/life. Therapies: We have invited a variety of traditional and alternative therapists to set up a table and talk to parents individually about the benefits their therapy offers for a child. Estate Planning: Christopher Currin, CFP, with Pegasus Advisors in Dallas and also a dad of a child with Down syndrome, will present the ins and outs of Estate Planning and explain how you do not need to be rich to use it to you and your child's advantage. Cooking Technology: Sarah Gerber will show how her daughter, Alyssa, who has CP and other disabilities, uses technology to cook and create cook books. 

Child care will be provided during these sessions if you want it but it is your choice to take your child with you or not.

Child Care: Child care is available for children of all ages on Saturday during the sessions starting at 9:00 a.m. but may be limited to the first 60 children registered. If your child needs special procedures, medication, or special help eating during this time, we may have to ask you to provide that – this will be determined on a case-by-case basis. The child care will continue until 8:30 p.m. on Saturday when our Keynote Speaker finishes. Child care is also available during the Sunday sessions from 9:00 a.m. until 12:00 p.m. If you have any questions, contact TxP2P at 866-896-6001 or 512-458-8600 or email Laura at Laura@txp2p.org or Susan at tprior@swbell.net

Continuing Education Units: We have received approval from the Texas State Board of Social Worker Examiners that the conference is approved for CEUs for Social Workers. We are still waiting for confirmation on LPC and will submit the paperwork for MEUs soon.

Again, if you have already registered for the conference and any of these updates or changes affect your registration information, please contact Laura at Laura@txp2p.org or Susan at tprior@swbell.net with the changes you would like to make.

We are all looking forward to the conference, making new friends,
seeing old friends, and hanging out in the dorms! See you there!

The 79 th Texas Legislature has left town (for now), leaving a vast amount of legislation to decipher. Agency staff and advocates alike will be very busy in the coming months analyzing the final legislation and developing recommendations for implementation. It’s difficult to know where to begin in describing the 79 th Texas Legislative Session that ended on May 30 th. The atmosphere both within the capitol and outside was very different. While the money wasn’t quite as “tight” as it was during the last session, the battles over status quo versus progress, versus quality, versus equity brought out attitudes of self-preservation that are not always in the best interest of the consumer. The issues are often complex, and one valuable lesson learned by many parents this session was the need to check the facts. With the internet making mass information distribution possible with the touch of a finger, it is often difficult to determine credible information from the not-so-credible. It was encouraging to see that many parents would read the alerts, ask themselves if the information made sense, and question further when everything didn’t quite add up. I congratulate you on your willingness to participate in the process, to question the information you receive, and seek out as much information as possible in order to make well-informed decisions.

One thing that was abundantly clear this session is that parents and families made a difference. The visits to the capitol, the rallies, the letters, and phone calls were all extremely important and those activities kept children with disabilities in the minds of the legislators. With that said, there is still much left to do in the months and years ahead. In a meeting with Senator Zaffirini in the final days of the session she said, “Yes, we got a lot more than we did last time, but it’s still not enough. Most legislators simply don’t recognize the unmet need.”

So our task continues to be to help policymakers gain a better understanding of what it means to have a child with disabilities, what family supports are and how they benefit the child and the family, and what can happen when the needed supports are not available. I am hopeful that Texas parents, while continuing to think and act independently, will also join forces to educate and advocate for our kids. It is the only thing that will continue to make a difference in our children’s lives.

With that said, below is a quick summary of some of the bills passed this session that will impact children with disabilities. It will take several weeks to wade through all the changes made in the final hours of the session, so look for a more detailed summary in the near future.

Have a wonderful summer with your children! As always, contact me whenever I can help with your information gathering. Also, if you are interested in collaborating with a coalition of parents who advocate for children with disabilities and their families, contact Elyse Luke ( elyseluke@hotmail.com) or Linda Litzinger (litzgo@swbell.net) to sign up for the TxPacs (Texas Parent Advocacy Coalition) listserv.

Bills Passed Affecting Children with Disabilities

SB 1 – Appropriations
The Appropriations Conference Committee appropriated additional dollars to provide new waivers slots for each of the state’s Medicaid waiver programs. The distribution of the new slots is expected to be approximately as shown in the table below. While this may not seem near enough, it’s important to remember that during the last session, there were no (that’s zero!) new slots appropriated, and in fact, the Community Based Alternatives Program lost approximately 3,000 slots during the last biennium.

Medicaid Waiver	Additional People to be Served
Community Based Alternatives (CBA)	3068
Community Living Assistance and Support Services (CLASS)	1645
Home and Community-based Services	2821
Medically Dependent Children’s Program (MDCP)	1350
Deaf/Blind/Multiple Disabilities Program (DB/MD)	18
Consolidated Waiver Program (CWP)	9
Total	8911

Children’s Health Insurance Program Changes in SB 1
Dental, vision, hospice, and mental health benefits that were eliminated or significantly reduced during the last legislative session were restored. Additional funding was appropriated for enrollment and to reduce the cost of premiums paid by families. Finally, a provision was included that requires the Health and Human Services Commission to request additional funding from the Legislative Budget Board prior to instituting a waiting list, reducing benefits, or capping enrollment in the program.

Rider #46 to SB 1 – Money Follows the Child Rider (Zaffirini)
This rider provides funding for 50 children residing in intermediate care facilities for people with mental retardation to transfer to community-based Medicaid waiver programs, allowing these children to return to their birth family or transition to family-based alternatives.

Rider #54 - CPS Reform Plan (Zaffirini)
Out of funds appropriated to the Home and Community-based Waiver Program, $1,182,270 in general revenue with the matching federal funding, must be set aside each fiscal year for children aging out of the CPS foster care system.

HB 1867 – Money Follows the Person (Naishtat)
For the past four years, a rider in the appropriations bill has allowed the funding being spent for an individual in a nursing facility to be transferred to community-based services if the individual (adult or child) preferred to live in their community. The practice has proven to be successful and has improved the quality of life for more than 5,000 individuals. Due to the fact that this provision was in a rider and not statute, it was easy for the state to take this provision away, or eliminate the practice/policy. Representative Naishtat recognized the need for this provision to be put into statute to protect the rights of people with disabilities to remain in their communities.

SB 40 – Permanency Planning (Zaffirini)
For several years now the state has had valuable permanency planning requirements for children residing in institutions. There is, however, a significant conflict of interest in the system that has made it difficult for the parents of children residing in intermediate care facilities for people with mental retardation (institutions) to obtain comprehensive, quality information on community options that may be available. This legislation removes that conflict of interest by removing the permanency planning responsibility from the facility where the child resides. The state will be required to ensure that an independent entity assumes that responsibility.

HB 2579 – Parental Responsibility for Children Placed in Institutions (Rodriguez)
Historically, children with disabilities have been placed in institutions without their parents having the benefit of comprehensive information on all service options available. Additionally, many children in institutions have only had very limited contact with parents or family, and in some cases, the facility is unable to locate the parents of children in their care. This legislation is designed to ensure that prior to placing a child in an institution, families have comprehensive information on all service and support options that will enable them to make fully informed decisions about the care of their child. Additionally, this statute requires parents to sign parental responsibility acknowledgements that encourage continued participation in their child’s planning and decision-making. Facilities are required to make reasonable accommodations to help families of institutionalized children play a more active role in their child’s life.

SB 566 – Medicaid Buy-In (Deuell)
This is a very short bill (in text), but a very important bill that will create a program in Texas that will allow individuals with disabilities to work while maintaining their Medicaid benefits. The Executive Commissioner of the Health and Human Services Commission will develop and implement a Medicaid Buy-In Program for persons with disabilities as authorized by the federal “Ticket to Work and Work Incentives Improvement Act of 1999.”

SB 626 – Cost Cap on Certain Medicaid Waivers (Zaffirini)
This valuable legislation puts into statute what was previously in a budget rider. It will allow for individuals enrolled in waiver programs to exceed the waiver cost cap up to 133.3% in order to prevent institutionalization and to ensure the individual is able to live in the most integrated setting.

SB 882 – Texas Council on Autism and Pervasive Developmental Disorders (Lucio)
This statute renames and further defines the responsibilities of what was previously known as the Interagency Council on Autism and Pervasive Developmental Disorders. (The new name is Texas Council on Autism and Pervasive Development Disorders.) This bill also requires the Texas Education Agency to conduct a study of the rule known as the “Autism Addendum,” which addresses seven additional areas of consideration that must be addressed during the IEP (Individual Education Plan) process for children with autism/PDD. The Agency is required to establish a committee that includes parents, teachers, and administrators to participate in the study.

HB 2 and HB3 – Public School Funding
As most know by now, the legislation for public school funding reform died in the final hours of the session. As of this writing, it is not known if Governor Perry will call a special session. Consequently, for the time being, special education funding weights remain unchanged.

Think of the benefits your child receives from the school system: a safe place to be all day, with opportunities for learning, enrichment activities, behavioral supports, exercise, nursing support, contact with caring adults besides yourself, structure and routine, job training and experience, and friendship. And it's free. And a law mandates school services, based on a plan created with your input.

Now picture your child's life devoid of these opportunities. That's life after graduation—nowhere to go, nothing to do, no friends, no assistance, no plan, no voice, no free activities! Wow! Get scared now.

How can you and your family work now to create opportunities for work, friends, and meaningful activities for your child after graduation?

• Start now, whatever the age of your family member with a disability. Get over your fears, denial, inertia, ignorance, whatever is keeping you from facing this issue. Focus on what your child needs.
• Get your child's name on the waiting lists for community supports; these lists have an 8 to 10 years' wait. See the box below for this information; in particular get on the list for CLASS and HCS.
• Learn about other community supports and services for adults in your community, such as Resource Centers for Independent Living, MHMR, DARS (TRC), The Arc, SSI/Medicaid. Find out what your child is eligible for and how to access these services and supports. Become knowledgeable about other important transition issues: guardianship and power of attorney, estate planning, the school-based transition process. Be prepared for each step.
• Realize that public funding does not guarantee a good life. Do not depend on these services for everything; here's where bold thinking, planning, creativity and collaboration come in.
• Create a plan: sit down with your child, other family members, friends, anyone who knows your child, and brainstorm together about the future. There are several planning tools out there, such as Person Centered Planning. Using this approach, ask your son or daughter: what do you like? What do you dislike? What are you good at? What are your talents and strengths? What supports do you need for living and working? What are your dreams for the future? Write down his or her responses and include the comments of the other participants. Then write an action plan for one of the dreams or goals the group has identified. These goals could be anything, lose 20 pounds, get a job, find a friend, move into an apartment, learn to read. It doesn't matter as much what the goal is as the process of gathering a group together and talking about the future. Most goals lead back to the basics and will move you along toward the future. Remember to encourage your child to participate as much as he can; if he is non-verbal, the group must speak on his behalf, as you imagine he would speak if he could. Siblings are often great at this and everyone enjoys being asked to speak up.
• Teach your child to speak up for herself, to be a self-advocate. IEP meetings are a great place to practice advocacy skills: your child might start by introducing the people around the table and eventually become able to discuss goals and services. These skills will assist her to get the help she needs when you are not around to speak for her.
• Be sure that your child is learning social skills wherever opportunities arise—at home, at school, at church, wherever he is with people. Getting along with people and building friendships are the most important skills we acquire through life—these skills usually make the difference between keeping a job and losing a job, between an isolated life and a life of meaning and fulfillment. Also be sure your child is learning to play—what activities do his peers participate in? Could your child learn to do them? Activities, interests, and hobbies often provide the best opportunities to build friendships.
• Be sure that your child is learning job skills. Give her chores to do at home; as she gets older, perhaps she can volunteer in the community. Be sure the school is providing vocational training and experience in secondary school. Help your child learn to take responsibility, show up on time, get along with the boss, acquire the skills needed to get and keep a job. Even people with the most profound disabilities can work in some capacity. And work is another way to add meaning to life and find friendships.
• Build networks for your child. Find people to involve who might be willing to take on some of the roles that you now fill in your child's life. Remember, no school services! What will your child do and with whom?

And build networks for yourself. The transition process is hard emotionally, as you face your fears about a time when there are no school supports and even the time when there's no you! Letting go of these children whom we have worked so hard to raise, protect, and figure out is not easy; we have invested so much emotionally by going through grief, shattered hopes, trial and error, that sometimes it's hard to stop doing it all for them. Find other parents going through this transition and build supports for each other. Perhaps together you can build a good life for your children!

• Picture a life for your family member with a disability that you yourself would enjoy living. Our dreams help us to keep our children from empty lives. So imagine your child as an adult living a “good life:” living in a place you would like to live, working, participating in the community, with opportunities for friends, fun, fitness, surrounded by people who care about him. Then start to work to make this a reality!

Now you are probably feeling quite overwhelmed. So take a deep breath and prioritize. You don't have to do it all at once. Start by getting your child's name on the waiting lists, then start educating yourself. Consider what needs doing now, what's most important for now. And keep reading this column for more concrete advice on planning for the future.

These programs are based on a child’s income (not the parents) in order for the child to qualify for Medicaid and then receive additional services that will allow them to remain in the community as opposed to a nursing home or institution. The programs provide funding for a personal attendant, respite, therapies, adaptive aids, home and vehicle modifications, etc. The programs listed below are all found on the following website: www.dads.state.tx.us

MDCP (Medically Dependent Children’s Program)
(877)-438-5658; this program provides a variety of services to support families caring for children who are medically dependent and to keep the children in their communities. www.dads.state.tx.us/services/communitycare/mdcp.html

CLASS (Community Living Assistance Support Services)
(877) 438-5658; this program provides home- and community-based services to people with related conditions as a cost-effective alternative to placement in an intermediate care facility. (A related condition is a disability, other than mental retardation, that originated before age 22 and that affects the ability to function in daily life.) (Waiting list) www.dads.state.tx.us/services/communitycare/class.html

CBA (Community Based Alternatives)
(800)252-8154; this program provides home- and community-based services to people who are elderly and to adults with disabilities as a cost-effective alternative to living in a nursing home. (Waiting list)

HCS (Home and Community Services)
(800) 252-8154; MHMR Medicaid waiver program; www.dads.state.tx.us/contact/mra/index.cfm
(Waiting list)

You may need to contact your local Texas Department of Aging and Disabilty Services to find out what specific Medicaid Waiver Programs are available in your area.

At my house we are through the first year of PG—post graduation. My son Will graduated from public school last May, soon after his 22 nd birthday, and this past April he turned 23. It's not been an easy year, even though we in Will's life planned and worked hard for PG, but I have learned a lot about what's working well and what is not, and I feel hopeful about the future! Hope is a rare commodity in this transition experience, so I'd like to share our story to give you some hope—and some ideas.

First I'll tell you about Will. He has a great smile, an infectious laugh, and a slap-stick sense of humor. He walks, though he falls easily. He learns routines over time and likes to be active. He enjoys riding an adapted 3-wheel bike, scribbling with paints and pens, and doing chores with another person's help. He likes to give you something and get lots of praise in exchange. He loves to feel included and hates feeling excluded. He “gets” situations, quickly figuring out what's going on and who might prove to be a friend. Assets in his pocket are a caring family and a funding source (one of those community supports that you have to wait 10 years to get). He does need lots of help—he doesn't read, write or talk. He has had a terrible seizure disorder and must get his medications 3 times a day. He is not safe alone and needs help with eating, dressing and toileting.

When Will was a young teenager, I began to wonder what he would do “down the road.” At first, I pictured him in a group home, but absolutely not an institution. Those were the only 2 choices I knew about. Then I heard an Austin Travis County MHMR speaker say that group homes as we have known them are being phased out. I felt shocked and very angry with the system. Does that mean Will should live with us forever? I love Will and enjoy his company, yet I knew that I couldn't provide his care forever. I also knew that I couldn't let him live without high-quality care and people around him who enjoyed his company. I was feeling very pessimistic.

The year Will turned 18 was busy: we got guardianship for him, we signed him up for SSI/Medicaid, and we realized that “down the road” was nearly here. As I worried, I happened on a book called A Good Life, by Al Etmanski, and for the first time I could see a way through transition. The author of this book, with his wife Vickie Cammack, started an organization around 1990 in Vancouver , Canada , that helps parents answer the question, what happens after we die? How can we provide on-going support for my child with a disability after we're gone? The first chapter talks about facing your own death. The second is about building a personal network for your child. The remaining chapters each focus on one major area of life: a home, work, financial planning, and guardianship. The book is full of stories about people who, with PLAN's help, created personal networks for their family members with a disability and worked creatively on other issues for adulthood. I was hooked.

I gained from this book a sense of higher expectations that we don't have to merely take what the government system provides but can dream of a life that suits Will. Then I had to think about what that life would look like, a realization which led me to person-centered planning. I found a facilitator in my school district to facilitate our planning sessions and invited 8 people to help us plan, my brother and his wife, an OT who had worked with Will, his job coach from school, some family friends, and our own family, myself and Bill and our son Randall. We met 3 times over 6 months, going through a series of questions about Will's interests and strengths and then formulating our goals for him. Then we created an action plan for each goal and worked on each action plan.

One of our goals emerging from these sessions was to create a personal network, as described in A Good Life, so before long, we had turned the planning group into a long-term network. Networks are for anyone who is at risk of isolation. You invite a group to meet regularly and become friends with one another and the person with a disability. The group stays involved, taking on various roles for the focus person, working to enrich and protect the life of the person with a disability. When a member has to leave the network, the group finds someone else to replace that person, thus ensuring longevity. Our network has met now about 4 times over a year. We meet at our house and eat together, talk about Will's issues and celebrate our shared lives. I think of this group as the keepers of his person-centered plan, responsible for seeing that he gets to do what he likes best and can avoid the things he doesn't like, that his dreams will continue to be our focus, that we base our decisions about Will's life on his dreams, his joys and strengths. It is a remarkable feeling to know others are willing to become involved in Will's life and care about his well-being. And the biggest fan of Will's network is, of course, his brother!

One other step I have taken is to write down what I know about Will—his medical history, how he communicates, how to work with his behaviors, what food he likes, what shoe size he wears, where I buy his shoes, and much more. I have given a copy of “Welcome to Will's Life” to his network members. The notebook continues to grow and change as Will changes.

Now at age 23 Will works a few hours each week, delivering mail at a seminary and delivering sandwiches at two schools. (Remember that he likes to give you something and get lots of praise in exchange?) He goes swimming once a week, attends a few activities and classes and does all these things with an attendant paid by CLASS. He seems to have moved from school to life beyond school pretty well. There are times when an activity hasn't worked out, sometimes he misses an activity because the attendant is ill, and perhaps he doesn't have enough to do. It's not easy to put together his life and I still feel that my system for him is fragile—there is no back-up plan. I meet regularly with a group of parents who are trying to create a home together for our children, where we would share resources and costs and (I hope) create a more stable system for our children. But today Will has fun, seems healthy and stays active. It's a work in progress. And I have hope that we can continue this journey and build a secure, quality life for Will.

One more step that I've taken was going to Vancouver in March of this year to attend a PLAN institute. I've come back to Austin eager to start a PLAN-like organization here and I've been welcomed into Texas Parent to Parent to create a center here focused on a quality life for our family members with disabilities. I'll be at the TXP2P conference on July 23-24 speaking on transition and creating “a good life.” Please find me there if you are interested in learning more or starting with some of PLAN's ideas in your area. I'll also continue to write for this newsletter on transition issues.

Good luck in writing your own transition story. ( A Good Life is available at www.plan.ca)

We have several Listservs that I want you to be aware of and you can contact me if you want to join one of them – email me at Laura@txp2p.org.

Special Home Schoolers Listserv: For parents of children with special needs that are home schooling their child; to share ideas, support, and information

Advocacy Listserv: For anyone who is interested in federal and state legislature issues around disability issues; to share information and alerts

ECI Listserv: For parents of children with special needs between infancy and 5 years old; to help with the transition between Early Childhood Intervention Programs and PPCD (Pre-school Program for Children with Disabilities) in your local elementary school

Texas Parent Group Listserv: For anyone who facilitates a parent group; to share ideas from meeting topics to becoming a nonprofit and a chance to interact with larger parent groups for support and information

Austin & Vicinity Listserv: For parents of children with special needs in the Austin area; to share resources, information, and support

Dallas, Ft. Worth & Vicinity Listserv: For parents of children with special needs in the Dallas and Ft. Worth area; to share resources, information, and support

BiPolar Listserv: For parents of children with BiPolar Disorder; to share resources, information, and support

Regional Listservs: To distribute the TxP2P newsletter via email only

We would love to have more area or specialty Listservs but need volunteers to moderate them. If you are willing to give it a try, contact me at Laura@txp2p.org All of these groups are on YahooGroups.com

Parent-to-parent support truly is magical. I have been involved with this type of support in some form for over 17 years. My first experience was before I knew there was such a thing. My son was a micro-preemie, born at 24 weeks gestation. Shortly after his first birthday, I heard that the OB who delivered him had a preemie in the NICU herself. Now, this was not a lady I knew all that well – I was over two months pregnant when I first met her and Jason was born less than four months later so we probably only met four times. I called her anyway and we had an awkward conversation but she seemed glad to hear from me. I called her two more times and the conversations were less awkward but I decided it really was not helping her to talk with me and did not plan to call again. In less than a week, she called me to share some good news. She had connected with me and found strength in knowing I was there and available to share in the good and bad news. That was my first experience with the magic of parent-to-parent.

Currently, there are 34 other statewide Parent to Parent organizations affiliated through P2PUSA. In 1998, a participatory action research team of parents and researchers through the Beach Center on Disability at The University of Kansas conducted a 3-year national study to determine the effectiveness of parent-to-parent support for referred parents. Parents and researchers worked together to design the study, write the grant application, and carry out this important study involving 400 parents nationally. The results indicate that parent-to-parent support increases parents' acceptance of their situation and their sense of being able to cope. Moreover, parent-to-parent support helps parents to make progress on the need they present when they first contact a Parent to Parent program, and over 80% of the parents found parent-to-parent support to be helpful. In fact, the data indicate a direct correlation between the number of contacts referred parents have with their supporting parent and how satisfied referred parents are with the support they receive, the greater the number of contacts, the greater the satisfaction. Interviews with parents suggest that the kind of support parent-to-parent offers is unique and cannot come from any other source. Based upon these significant data, the research team recommends that parent-to-parent support should be an essential component of a comprehensive family support system. Best practices for parent-to-parent support were established from this study.

So, Texas Parent to Parent is not a new concept. We are following in the footsteps of many other parents who did what was in their heart – offering support, information, our hearts and ears to other parents. The staff and Board of TxP2P are determined to always strive to stay true to that basic mission.

Thirty-three Texans graduated from the Texas Council for Developmental Disabilities’ leadership and advocacy training program, Partners in Policymaking, Class of 2005, on April 30.  This brings the total number of graduates to 572 Texans.  The newest Partners are: Fernando Acosta, Taft; Glynis Alexander, Sherman; Laurie Asher, Poth; Steffanie Budge, Houston; Lisa Burns, Houston; David Caster, Bedford; Peter DeLuna, Weslaco (TxP2P Parent); Michelle Guppy, Cypress (TxP2P Parent); Jacqueline Harris, Houston; . Eve Hernandez, Hondo (TxP2P Parent); Karla Howell, Richmond; Debbie Jacobs, Dallas (TxP2P Supporting Parent Volunteer & Board member); Mary Klentzman, Temple (TxP2P Supporting Parent Volunteer); Amy Laguna, Tomball (TxP2P Parent); Elizabeth Longworth, Irving; Esmerelda Maese, El Paso; Gracie Maronge, Spring Branch; Terry Neal, Channing; Kim Padgett, Alpine; Gilbert Paul, West Columbia; Gloria Perez-Walker, Austin (TxP2P Parent); Anabel Rios, Houston; Maria Rodriguez, Stafford; Jeri Schrimsher, Temple; Anne Schultz, Marshall; Eva Smith, Houston; Denise Sonleitner, Austin (TxP2P Supporting Parent Volunteer); Jeanine Stabile, Denton; Gale Truman, Friendswood; Mariellen Weiss, Houston; Shewanda Williams, Houston (TxP2P Parent); Pam Willson, Brookesmith; and Tanya Winters, Austin.

Congratulations to the new Partners!!

What a year! 2005 has certainly been the year (so far) for Texas Parent to Parent!

In June, we received a DSHS grant through Children with Special Health Care Needs to provide parent-to-parent support in the Rio Grande Valley. This grant allowed us to hire more staff, including Leticia Padilla, a Supporting Parent volunteer with us for many years and former Board member from the Valley

In July, we presented our annual conference with over 100 parents and professionals attending at University of Mary Hardin-Baylor. We had great speakers and everyone seemed to enjoy themselves as well as learn new information. Next year, we plan to have the conference in Austin so start watching for information around the first of the year!

In October, we had our first public fundraiser - Vine to Wine at the Lady Bird Johnson Wildflower Center in Austin. The catering for the event was donated by Central Market - Westgate and wine was donated by Republic Distributing Company. It was a beautiful setting and a lovely evening, complete with awesome food and wine, music by Django’s Moustache, and a silent auction with some great items such as weekends at resorts, golf clubs, golf with a former State Representative, and large format wine. It was quite magical, beyond our wildest dreams, and raised money for us as well!

Finally, we received word that we got the Center for Medicare/Medicaid Real Choice grant for the Family to Family Health Care Information and Education Center for the state of Texas. Only one grant is awarded per state and we are one of several statewide parent-to-parent programs that received the grant in the past couple of years. We are honored to be chosen for this work! We have hired Jeanine Pinner, another former Board member, who will travel around the state to provide trainings on health care for parents and professionals.

What follows is taken directly from the updated manual, It’s a New IDEA! from Advocacy, Inc. and The Arc of Texas. The entire manual can be found on their websites: www.advocacyinc.org or www.thearcoftexas.org

Referral: IDEA 2004 made changes in the referral process for a student suspected of having a learning disability. Now, prior to or as a part of the referral process, the school must assure the student has been provided appropriate, high-quality research-based instruction in a regular classroom, delivered by qualified personnel. Data-based documentation of the student’s progress must also have been reported to the parents. Once the student has been referred, however, the timelines for conducting the evaluation still apply. The new considerations were added by Congress because of concerns that too many students were being referred to special education, and labeled as “learning disabled,” who had not been provided with good instruction in the classroom.

Is the Student Eligible for Special Education Under IDEA?: IDEA 2004 changed the way a student is determined to have a learning disability. A local school district can not be required to first determine that the student has a severe discrepancy between his intellectual ability and his level of achievement. IDEA also now allows a local school district to consider whether the student has received a method of instruction known as a response-to-intervention (RTI). Once there are final federal regulations (probably in December of 2005), Texas Education Agency (TEA) will need to revise its criteria for determining that a student has a learning disability. You will want to watch for information from TEA or from an organization such as the Learning Disabilities Association of Texas.

Excusing Members of the ARD Committee: As of July 1, 2005 , an ARD committee member can be excused from all or part of the meeting if the parent and the school agree that person’s attendance is not required because that person’s area of the curriculum or related services is not being modified or discussed. However, the parent must agree in writing to excuse a required member of the ARD committee for any or all of the meeting. A member of the team may also be excused from all or part of the meeting even when the meeting involves a modification to or discussion of the member’s area of the curriculum or related services, if the parent and the school agree in writing and the member provides written input to the parent and the ARD committee prior to the meeting.

Parents should not feel pressured to agree to excuse someone they believe should be there.

Note: Even if the parent agrees to excusing a particular regular education teacher from the ARD meeting, the law still requires that “at least one” regular education teacher be at the meeting.

Services Provided must be based on Peer-Reviewed Research: The IEP you develop must end with a clear statement of the special education and related services, as well as the supplementary aids and services that must be provided to the student. IDEA 2004 adds an important new requirement that the services provided to a special education student must be “based on peer-reviewed research to the extent practicable.”

Though the term “peer-reviewed research” is not defined in IDEA, it is assumed to be similar to the requirement in No Child Left Behind that instruction be based on “scientifically-based research.” (Remember, NCLB also applies to special education programs.) The intent is clearly to require schools to have credible research behind the choices they make on how to instruct students. If you are told the school intends to use a particular teaching strategy, ask them to describe the peer-reviewed scientifically-based research that supports this particular technique. In the past, ARD committees often refused to discuss “methodology” by saying that how the student was taught was solely at the discretion of the school district. Under this new requirement, ARD committees will have to discuss methodology in order to determine whether the instruction the school is proposing meets the standard of peer-reviewed scientific research. To learn more about scientifically-based research, go to: http://www.ed.gov/nclb/methods/whatworks/research/index.html. For information about sound research-supported practices, go to the website of the What Works Clearinghouse at http://www.whatworks.ed.gov

What Happened to Objectives? If your child has previously received special education, you are used to IEPs that contain both goals and objectives. Short term objectives (sometimes called “benchmarks”) are small, measurable steps leading to reaching each IEP goal.

When Congress reauthorized the IDEA in 2004, they eliminated the requirement for short term objectives for the majority of students receiving special education. Most IEPs are now required to have only annual goals. Short term objectives must only be written for those students who take an alternative assessment rather than the TAKS test.

Just because short term objectives are no longer required for some students, this does not mean they cannot be written if the ARD committee thinks they are needed. If you think one of your child’s IEP goals should contain short term objectives as a way to help your better monitor progress, you should certainly ask the ARD committee to write them.

Since short term objectives are no longer required for all students, annual goals must be more comprehensive then many have been in the past. IEP goals must be measurable and include both academic and functional goals. They can no longer be just broad statements of what a student will accomplish during the school year.

Statewide Assessments: In the 2005-06 school year, a new test has been added for some subjects and some grade levels. The new test, TAKS–Inclusive or TAKS-I is for students on or near grade level who need accommodations (documented in their IEP) that would invalidate the TAKS. TAKS-I must be taken at the grade level the student is enrolled in. TAKS and TAKS-I meet the IDEA 2004 requirements.

Individual Discretion: School administrators are now allowed under IDEA to use discretion on whether or not to change the placement of a student with a disability who violates the student Code of Conduct. This means the principal (or other administrator) no longer must apply a local “zero tolerance” policy to a student with a disability, but can use discretion because of the impact of the student’s disability. This will hopefully decrease the number of students with disabilities sent to Disciplinary Alternative Education Programs because the administrator says he has “no choice.”

Manifestation Determination: It is now more difficult to find a student’s misbehavior was a manifestation of his disability. The new standard is that the misbehavior must have been “caused by” or had a “direct and substantial relationship” to the child’s disability, or was the “direct result” of a school district’s failure to implement the IEP. Manifestation determinations are still not required for removals of less than 10 consecutive school days.

Removals for up to 45 days: Previously removals were allowed for up to 45 days for offenses involving drugs and weapons, regardless of whether the offense was a manifestation of the student’s disability. IDEA 2004 adds the infliction of “serious bodily injury to another person” as an additional offense for which a student can be removed for up to 45 days. Also, 45 days now refers to “school days” rather than “calendar days.”

“Stay Put””: When a parent files for a due process hearing to challenge a disciplinary action, the student will remain in the disciplinary setting pending the hearing decision, or the end of his disciplinary placement. Previously, “stay put” left the student in the placement he was in before the disciplinary removal. This new definition of “stay put” is only applicable to disciplinary removals.

Expedited Hearings: In discipline cases, the student is entitled to an “expedited” hearing within 20 school days after the hearing is requested. The hearing officer must issue a decision within 10 school days after the hearing.

Changes without an ARD meeting: IDEA 2004 now allows some changes in the IEP to be made without an ARD meeting. Changes outside the ARD process are intended for changes that are not controversial and do not need to discussed. The only requirements for amendments to the IEP without an ARD meeting are that the school and the parent agree and that the amendments be in writing. If you are asked to agree to a change you don’t agree with, or don’t understand, you should ask for an ARD meeting. If the IEP is changed without an ARD meeting, the school must provide you with a copy of the revised IEP at your request.

Requesting a Hearing: IDEA 2004 expands the information that must be included when requesting a due process hearing. The party requesting due process (typically a parent or the parent’s attorney) must provide what is called “due process complaint notice” to the other party (typically the school district) and to TEA. This notice must include:

• the name of the child, the address of the child, and the name of the school district;
• a description of the problem in dispute, including relevant facts; and
• a proposed resolution to the problem.

Resolution Session: This is another, and very important, requirement of IDEA 2004. Before conducting a due process hearing the school must convene a meeting with the parents and the relevant members of the ARD committee who have knowledge of the facts in the due process hearing complaint. The meeting must include a school representative who has decision-making authority and must be held within 15 days of receiving the complaint. The school may not bring an attorney to the meeting unless the parent is bringing an attorney.

The purpose of the resolution session meeting is to give the parents the opportunity to discuss their complaint and the school is given the opportunity to resolve the complaint. The resolution session meeting is required unless both the parent and school agree in writing to waive the meeting or they agree to mediation. If the school has not resolved the complaint within 30 days of receiving it, the due process hearing will proceed. Unless an extension of time has been ordered, the hearing officer’s decision is due 45 days from the date of your request for a hearing, even if the parties choose to use the resolution process first.

If a resolution is reached, the parents and the school must sign a legally binding agreement. The agreement is enforceable in state or federal court. Either the school or the parent can withdraw their agreement within three days of signing it.

Attorney’s Fees: New provisions in IDEA 2004 allow the hearing officer to require the parent or the parent’s attorney to pay attorney’s fees to the school district award if the parent’s complaint was frivolous, unreasonable or without foundation and/or if the complaint was presented for an improper purpose, such as to harass, cause unnecessary delay or needlessly increase the cost of litigation.

Placement During Due Process Hearings and Court Appeals: In discipline cases where a student has already been removed from the classroom for an interim period, the “stay put” provisions do not apply. You also may be entitled to an expedited hearing.

I just finished a great book of articles written by adults with disabilities for parents of children with disabilities. I was nervous about starting it because I was not sure that I would like what I was about to read but I was greatly surprised to find that the articles mimicked a lot of what we tell parents through TxP2P:

* Trust your gut feelings when you disagree with professionals – most of the time you are right!

* Acknowledge and accept your feelings of grief and loss,

* Acknowledge that what breaks your heart may not break your child’s,

* Acknowledge your child’s strengths and abilities and accept their limitations only when they prove they have any,

* Integrate your child into their community as fully as possible,

* Learn about your child’s rights and learn to advocate for your child,

* Talk to your children about their feelings, needs, and desires,

* Acknowledge that your child is an individual and has their own life to lead – help them prepare for that life,

* Connect with other parents for support and fun,

* And, find something to do for yourself – just for you – and do it on a regular basis.

I highly recommend that all parents read this book – these writers say in many different ways how to help your child and your whole family. I found that several of the writers spoke directly to me and I think you will too!

Laura J. Warren, TxP2P

If you have read a good book on disabilities issues, consider writing a review of it for this newsletter. Send your review to Laura@txp2p.org

During the past several months, much of the activity in Austin ’s health and humans services arena has been focused on implementation of the various legislation passed during the 79 th Legislative Session. Many bills that were passed required implementation of certain provisions by September 1 st. Advocacy groups have been involved in the development of many of the current efforts and will continue to follow the implementation of new rules and policies affecting children and adults with disabilities. Additionally, the Children’s Policy Council has met several times and is working on encouraging the agencies to implement many of the recommendations included in their last report. (The report can be found at www.hhsc.state.tx.) Finally, the Promoting Independence Advisory Committee continues to push state efforts to allow individuals with disabilities, both adults and children, residing in institutions to obtain community-based services.

All this work was keeping agency staff and advocates alike very busy, and then, Katrina hit. In Austin , as throughout most of Texas , people have responded to the crisis and have gone into over-drive to do whatever needs to be done.

Hurricane Relief Efforts for People with Disabilities:

As you all can imagine, due to the recent catastrophic events in the Gulf Coast Region, and the large number of evacuees coming to Texas , the Texas health and human service agencies have been extremely busy trying to manage the immediate crisis as well as plan for future needs. It’s an extraordinary task. Executive Commissioner Hawkins (Texas Health and Human Services Commission) has directed Commissioner Sanchez (Texas Department of State Health Services (DSHS)) to develop both short and long term plans to address the health and human service needs of these individuals. The Department has solicited input from a wide variety of stakeholders and is working with the Department on Aging and Disability Services (DADS) to ensure that children and adults with disabilities get critically needed services. At the same time, the Governor’s office and the Health and Human Services Commission are working closely with the federal government to ensure that Texas receives 100% reimbursement for the services provided to hurricane evacuees.

Additionally, the Administration on Developmental Disabilities (U.S. Department of Health and Human Services) is working with The Center for Disability Studies, Advocacy, Inc., and the Texas Council for Developmental Disabilities to find ways to assist evacuees with disabilities. The needs will be great, not only in the immediate future, but also for the long term. Staff from all of these agencies have been busy working in various shelters assisting individuals with disabilities and their families find housing and obtain needed medical and support services. These agencies are also working with state offices to help identify current and future needs and develop recommendations on how to accomplish what needs to be done.

Many families have asked if this crisis will affect the rollout of the 9,360 new Medicaid waiver slots appropriated by the legislature. DADS has assured us the waiver slots will not be used for hurricane relief and that families can expect that process to continue as planned. With that said, it is reasonable to expect some minor delays in some areas due to the amount of time case coordinators are spending on the relief efforts.

Other Updates:

As mentioned above, the Department on Aging and Disability Services is working extremely hard to ensure that the newly available waiver services are made available to people on the various waiting lists as soon as possible. Slots for each of the waivers will be offered in phases, with the first phase being six months and the subsequent phases being every quarter. During each new phase, individuals and families will be notified of their eligibility. There are fairly strict timelines in which families must respond to the offer of waiver services. If these timelines are not met, the names will be removed from the waiting list. It is extremely important to respond quickly when a notification is received.

While the process can seem overwhelming at times, there are plenty of people who can assist with information gathering. Texas Parent to Parent can be one of your primary sources. Talk to other parents about provider agencies and case coordination agencies that they have used. The experience of other families is often the best gauge of quality. You should also talk to the various providers to find out which ones have the most experience in working with children who have disabilities similar to those of your child. Providers do sometimes “specialize” and are better at understanding and supporting people with certain types of disabilities. Get as much information as you can before making your decision.

On the education front, Advocacy, Inc. has announced the on-line publication of their revised parent manual for parents of children receiving special education services. This revised manual reflects the recent changes to IDEA and is titled, “It’s a New IDEA.” You can access this new manual online at www.advocacyinc.org Printed versions will not be available until the new regulations are published and final changes can be made to the manual.

As always, if you need additional information, you can contact me at colleen.horton@mail.utexas.edu

Hopefully, you already have a doctor who you feel provides family-centered care! But if not, your first step will be to locate a new doctor! If you need assistance with locating one in your area, “The American Academy of Pediatrics Pediatrician Referral Service (herein after called AAP Pediatrician Referral Service) is intended for use by the general public to allow them quick access to information on pediatricians.” If you are looking for a pediatrician who specializes in the care of children with disabilities and/or children with developmental or behavioral issues, you can use the Pediatrician Referral Service to search for a pediatrician by specialty. You can also search on a website for a pediatrician by last name, city, state, zip code or area code at www.aap.org/referral/Another option, and my favorite, is to contact Texas Parent to Parent (www.txp2p.org) and see if they have any physician referrals from parents in your area of Texas . The important thing to remember is that just because a doctor is on someone’s referral list does not mean that you will approve of them.

Okay, so you have a doctor; it does not have to be the pediatrician, it could be the sub-specialist (neurologist, orthopedist, cardiologist, dermatologist, etc.) that you feel is the doctor who coordinates your child’s care, the one who keeps up with all the other things going on with your child in order to make sure that he/she receives continuous, comprehensive, and coordinated care. If it is a physician you have been working with for a while, you may feel comfortable giving him/her the Medical Home Brochure and asking what you can do to help his office become more involved. Of course, this is after you have expressed your appreciation for all the wonderful care your child has received over the years. However, just like everything else in our lives, it is easier if you have ideas of ways you can “help” the office become more family friendly, provide families with much needed information, help the office run smoother, and even SAVE the office $$$$. The latter being a very important point because cost is usually one of the first responses on why things cannot be changed from the office manager or physician. However, the American Academy of Pediatrics believes in the philosophy of Medical Homes for all children because not only does it enhance the quality of care a family receives, it also enhances the overall effectiveness of the practice. The AAP has developed a link on their website that covers the reimbursement arena for practices.

So, the following is a list of a few ideas to help you get started.

• Simply ask your child’s doctor if some of the family-centered things he/she does could become more general practice. Suggest that the office organize a meeting of parents, staff, and providers to talk about how to improve services for families like yours. Sometimes, it is difficult to say negative things to professionals but if it is done in a positive manner to people who are really interested, it could make a BIG difference for everyone. Some of the things that have been discussed in meetings are accessibility, how easy is it for you to get to your appointment? What could make it easier? When you get to the office is parking available? Can you put a wheel chair lift down and get a person in a wheelchair out of the vehicle in the space provided? Are the doors electric? Does a staff member help you get in? Is there ample space in the office for a person in a wheelchair? How long is the wait time? How difficult is the wait time for you and your child? Is there enough time during the actual visit? Is there some sort of code to alert the appointment desk to schedule extra time during the visits of patients with special needs? A simple sticker works. In the past year, we have been working with several physicians’ offices through the CSHCN Medical Home Learning Collaborative and have watched them make changes to some of these things and more, so there is hope!
• Offer to set up a Parent Resource and Networking Bulletin Board in the office. This may sound like a lot of (free) work and it can be but it does not have to be! Texas Parent to Parent has a Resource Directory on their website that is regularly updated and printable in complete or by specific area. Are there meetings in your area? If so, put it on the board too! But remember to keep the board current.
• If there are parent meetings in your area, maybe some of the information would be helpful to the office staff - invite them to attend the meetings.
• Invite the physician to speak at one of the meetings or maybe the office would like to host a “Parents Night”. There are numerous topics that could be a possibility (disability specific topics, potty training, behavior, transitions, resources, etc.)
• Does your child have a Care Plan? How about an Emergency Room Information Sheet? A positive point to stress is that if the patient goes into the ER with an Emergency Care Plan, they will not have to contact the physician in the middle of the night when their patient shows up! So, if you have a care plan, discuss it with your doctor, let them help you make sure the information on it is really what a stranger would need to know about your child to provide the proper care. Then offer to share your plan with other “patients” in the office; this could also be another topic for a parent meeting. You may even be able to get your local emergency department to host or sponsor such a meeting because of the valuable information the plan would provide them. If you do not have a care plan, you can search the internet or go to the AAP website at www.medicalhomeinfo.org/tools/care_notebook.html, contact Texas Parent to Parent, or contact the CSHCN (Children with Special Health Care Needs) office at Department of State Health Services, 1100 West 49th St ,. Room 442, Austin , TX 78756 . www.dshs.state.tx.us/cshcn/default.shtm They can also be contacted at the CSHCN Inquiry Line at 1-800-252-8023

This is a major start!

The fact that this whole Medical Home philosophy was created by the American Academy for Pediatrics should be enough to put it in action but the truth of the matter is IT IS NOT! The definition came about around 1992 out of the AAP and here it is 2005 and this is as far as it has come! So please, help us make a difference and we’ll help you in any way we can!

Tammy Mann, Parent Representative
CSHCN Medical Home Learning Collaborative
CTKMann@sbcglobal.net

As your child transitions through ECI, PPCD or Early Childhood classes, and Elementary school, you gradually learn what accommodations your child needs. Around third or fourth grade you might start noticing that the other kids are not as friendly with your child as they were – he no longer fits in as easily. If this happens in elementary school, what will happen when puberty hits?!? Middle school, high school, transition services, graduation – the words that strike fear in the hearts of parents of children who receive special education services. Middle school for my son, Jason, looked like a disaster waiting to happen – 1,500 students in a fairly new school that had to use “port-a-potties” because the school just was not big enough to accommodate the growth in southwest Austin . I looked into private schools and found one close to home that would accept Jason. There were only 30 kids – what could go wrong!! Well, just about everything – the only good that came out of the experience was that the anxiety Jason experienced in elementary school disappeared. He learned to live with kids teasing, thumping, and/or ignoring him, a teacher that had no clue how to motivate him and no desire to protect him, and left after 3 years with no close friends and maybe 3 phone calls from kids from his school.

This did not bode well for high school and my visit with his home school was a nightmare – they wanted him in a unit for kids with emotional disturbances “to keep him safe.” I explained he had been in regular classes since first grade to no avail – I left in tears (my typical reaction to shock).

I called on all my resources, we worked hard to find the right school, met with lots of school administrators, and got a transfer to the smallest and only one-story high school in Austin, had pre-ARD and ARD meetings, first day plans for arriving and arranging help for Jason to navigate the school. We arrived on the first day of school to the loudest mass of teenagers in a hallway that either of us had ever seen, definitely not where a kid with sensory issues wants to be. Jason looked at me with pure horror in his face as I was lead away in tears (again, shock) by an aide.

From this scenario, who would ever believe what followed. By the third day of school, Jason had been recruited into the orchestra to play the double bass. I met with the orchestra teacher and asked him if he understood that Jason had cerebral palsy and weak fine motor skills. He assured me it would be fine. And it was – partly due to orchestra, partly due to a very involved Life Skills teacher who got Jason involved with the PALS Program – high school was the best four years Jason spent in school. He had friends, participated in after-school activities, and was accepted for who he is.

I could end the story here but we learned so much the last two years of Jason’s high school experience that I feel compelled to pass it on so it might benefit someone else. For instance, in Austin ISD, resource classes do not count toward graduation. Jason has the cognitive abilities to succeed in academics but getting the information out and on paper is not always easy. To make the transition to high school and the world of 7 classes a day, Jason started in a Resource Math, English and Science classes his freshman year. We quickly realized that the science class was too remedial and moved him into Biology but he remained in Math and English. We moved him out of resource English the next year and Math the following. We found out at the end of Jason’s junior year that the English resource class did not count toward graduation. After a little research, it was determined he could test out of English I, just as a student would to skip classes to get into more advanced ones. We paid the fees and Jason passed English I during his senior year! Problem solved.

Physical Education – it was determined that Jason was too functional to be exempt from P.E. He had to take it – 3 semesters! We solved 2 semesters with bowling (that story occurs in a previous newsletter). The one-semester class, Fundamentals of Physical Education, is a required course for all Texas students. The ARD committee proposed all kinds of accommodations that Jason and I still didn’t find acceptable but I remembered a different way – a friend’s son had taken the course on-line. Sure enough, it was still available. Jason enrolled in Texas Tech extension classes, bought his book, and followed the instructions from his on-line teacher. It was an interesting time what with testing his flexibility, stamina, etc. and was stretched out to April of his senior year. P.E. problem solved.

Last but not least, the dreaded TAKS test. Jason passed his English TAKS test and received a commendation in his Social Studies TAKS during his junior year. We got the study guide for the Science TAKS test from TEA, studied for 3 days, and he passed the test during the summer. Math TAKS – just the word gave him an anxiety attack. Math is not his strong suit and math tests for him are disastrous. He and his dad studied using the TEA study guide for 6 weeks before taking the test in October. When we had his graduation ARD, we still did not know if he had passed or not. In the graduation ARD paperwork, there was a place that could be checked that said he could receive the Recommended Graduation Plan (he took 2 years of Latin, struggled through Algebra II, and science through Chemistry to receive the Recommended Plan) without passing the Math TAKS. Why it is there? I do not know. Is it real? Seems to be – no one has come to tell us he did not really graduate. We asked Jason if he wanted to try to pass the Math TAKS one more time – he quickly said “no!” Before I would say yes to this strange turn of events, I had to know if the school Registrar would approve it. She did! We were done with his final ARD. Then someone arrived to say that Jason did not pass the TAKS. Oh, well . . .

Graduation came on May 28 th – the whole Warren/Alworth/Wimbiscus family arrived for quite a celebration, lasting almost a week. Jason walked across the stage and everyone screamed for him – I cried - with joy this time.

Michael was a planned home birth. It seemed to go well until he delivered, purple and lifeless! The midwife successfully resuscitated him and he spent the next 5 weeks in neonatal intensive care. If you’ve been through that, you know that the neonatologist has frequent conferences with the family about the baby’s condition. Ours was very conscientious about keeping us informed on Michael’s condition. From the start, it was clear to the doctors that he had massive brain damage.

Every time we met with the doctor, he would start with Michael’s birth and relate everything to that point in time. We knew all about his birth…after all, we were there! We knew what had happened subsequent to his birth. We really didn’t want to hear it over and over again. We wanted to hear any new pertinent information…we were hungry for that.

(Now I realize the doctor probably ached almost as much as we did because he could do so little to help Michael…this was his way of trying to prepare us.)

I began to resent the meetings with the doctor. Back then, I was much more in awe of doctors (the God syndrome) and wouldn’t think of telling him how I wanted my conferences to be handled. Of course, over time, we learned that a partnership between parents and professionals is a successful model, but this was in the beginning. I remember one time when the doctor’s back was turned, I put two fingers up behind his head to represent him having horns because I was so frustrated with him.

Over time, that frustration waned. Long after Michael’s discharge, the day came when I was ready to forgive the doctor for taking us through the birth time after time. I wrote him a letter on my computer. This was back in the days of DOS and I wanted to save the file name as “forgiveness”. Unfortunately (later I realized it was actually fortunate), DOS would only save the first eight letters of the file name … “forgiven”.

I sat and looked at that file name and realized that part of the forgiveness process I had to go through was to forgive myself. For any role I may have unknowingly played in Michael’s condition. For any anger or hurt I felt because of his condition. For anything I felt towards the professionals. And probably much more.

Michael left us 10 years ago. I don’t have to forgive myself very often anymore but I will never forget that lesson. Forgiveness is not a one way street. It is not just the other person who we are forgiving. It is often ourselves that we need to forgive as much or more than the other person. For allowing ourselves to be judgmental or angry or just being human. There is a saying that we are spiritual beings having a human experience. Forgiving ourselves and others is part of that human experience.

October is National Apple Month so in honor we’ve selected this fun apple tree project for the month.  Art is a wonderful way to keep connected with your child, whatever their ability. Remember to encourage them to participate by allowing them to make choices:  yellow apples, or red apples?  High or low?

APPLE TREE:
 
Materials Needed:
brown paper lunch bag
rubber band
construction paper for what colored apples you want your tree to be
newspaper or something to wad up to fluff up the middle of the bag
Cellophane tape
 
1. Cut slits down about 1/3 of the way from the top end of the bag.
2. Open up bag and stuff with newspaper or other filler. Close up bag and rubber band it to create a trunk.
3. Twist the cut pieces of brown bag into branches.
4. Add green leaves and your favorite color apples. (you could cut leaves and apples or tear them)
5. You have your finished tree. You can use it as a centerpiece for the table, or make a whole orchard just for fun.
6.  When the leaves change color, you could do another tree with different colored leaves.

For more ideas about the arts, visit www.vsatx.org

There are 10 of us working at TxP2P now with almost 140 trained Supporting Parent Volunteers, almost 1,000 families, and over 300 professionals on our mailing lists. We’ve only been open for 3-1/2 years but parent to parent support is obviously a needed service in Texas . I want to give you a brief introduction to the staff of TxP2P and then get you updated on the programs we have available, are creating, or are somewhere in between.
The TxP2P staff talks to parents on a daily basis but we also have other duties. We are:
Laura Warren, Executive Director, Founding Partner of TxP2P. She has a son, Jason, 19, who was born at 24 weeks gestation and has mild disabilities and learning difficulties. Laura works on overall coordination of TxP2P, grant management, grant writing, fundraising, the new transition program, the newsletter, the website, and provides parent support.
Sue Regimbal, Financial Director, Founding Partner of TxP2P. She has two daughters, Ciara, 6, and Maeve, 2. Sue works on overall coordination of TxP2P, financial management, grant management, grant writing, fundraising, and evaluation analysis.
Patty Geisinger, Co-Volunteer Coordinator, Founding Partner of TxP2P. She has four children, Josh, 16, Jessie, 14, Libby, 9, and Mary, 7. Jessie has multiple disabilities. Patty works on parent matching and follow-up, Supporting Parent Volunteer trainings, v
Debbie Wiederhold, Resource Coordinator, has been with us for 1-1/2 years. She has 3 grown children and Daniel, 13, with Osteogenesis Imperfecta, Type 2. Debbie researches new resources and services for families for our Website Resource Directory, keeps our resource information up-to-date, provides parent support, and works on our Medical Education Program.
Shawn Lennartson, Respite Coordinator, has been with us for about a year. He has a daughter, Anna, 14, with Osteogenesis Imperfecta, Type 1, and 9-year-old twin boys, Eric and Carl, who were preemies. Shawn works on our Faith-based Respite Program, parent matching and follow-up, and provides parent support.
Leticia Padilla, Regional Volunteer Coordinator for the Rio Grande Valley, has just been working with us since September, 2005. She has a son, Gerardo, 11, who has autism. Letie provides outreach, parent matching, parent and volunteer support, and trainings in the Valley. You can reach Leticia directly at 956-793-9543. Leticia also speaks Spanish.
Grace Garza, Administrative Assistant, also has just been with us since September, 2005. Grace has grown children and helps with parent paperwork, mailings, parent matching and follow-up, and evaluations. Grace also speaks Spanish.
Rosemary Alexander, Transition Coordinator, also has just been with us since September, 2005, and is a Founding Partner of TxP2P. Rosemary has two sons, Will, 23, with multiple disabilities, and Randall, 21. Rosemary is helping us get our Transition Program started.
Jeanine Pinner, Outreach and Training Coordinator, has only been with us since October 31 st. She has two children, Laney, 30, and Jake, 14, who has autism. Jeanine is working on the Family to Family Healthcare Education and Information Center (see article in this newsletter).
Claire Milam, Co-Volunteer Coordinator, has just started with us. She has two children, Isabel, 5, and Julio, 3, who has Down syndrome. Claire works on parent matching and follow-up, Supporting Parent Volunteer trainings, and volunteer and parent support. Claire also speaks Spanish.
We are all pleased to be working with TxP2P and watching it grow. It seems to have taken on a life of its own that we sometimes just have to follow! If you call us and get a busy signal, please be patient and leave us a message. We will get back to you as soon as we can. We get a lot of calls, many from parents who do not have children with special needs but we still try to direct them to the appropriate resources if possible.
Our basic services will remain the same and include:

• Information and referral , through staff experience and knowledge, Supporting Parent Volunteers, and our Resource Information Sheets and Resource Directory on the website, www.txp2p.org.
• Parent support , including parent-to-parent matching, through staff and Supporting Parent Volunteers: to date we have matched over 450 parents with trained, experienced parent volunteers. However, many parents are still waiting for a match. We need your help! If you are interested in being trained as a Supporting Parent Volunteer, we have scheduled the following trainings:

1/14/06 : Rio Grande Valley
1/28/06 : Austin
2/11/06 : Dallas
4/8/06 : San Antonio
6/24/06 : Rio Grande Valley
9/16/06 : Houston
11/4/06 : Dallas

We will also offer a training in conjunction with our Annual Parent Conference. If you are interested in one of the trainings, please call 866-896-6001 (Austin area 458-8600) or email Patty (Patty@txp2p.org) or Claire (Claire@txp2p.org) to sign up. We will contact you with more details on each training as we get closer to them.

• TxP2P Newsletter continues quarterly for 2006. We recently received some help with the printing costs through Sterling ’s Printing and Copying in Austin which will make preparing the newsletter quite a bit shorter for us. If you would like to submit an article for the newsletter, please send it to Laura@txp2p.org
• TxP2P Website will undergo some changes after the holidays when we move to a different software program that will hopefully make it easier to update. Our website address has officially changed to www.txp2p.org so you will not be able to access it through the www.main.org/txp2p.org website much longer. You can email any of the staff by using their first name @txp2p.org
• TxP2P Annual Parent Conference is in the planning stages and we hope to get it scheduled for June in Austin . We’ll announce the date and location early in January. If you would like to participate in the planning process, call 866-896-6001 (Austin area 458-8600) or email Laura at Laura@txp2p.org
• TxP2P Medical Education Program (MEd.) continues to train Pediatric and Family Practice residents, as well as other health care professionals, in five sites in Texas . There is a separate article about this program in this newsletter.
• TxP2P Faith-based Respite Program continues in the Austin area to create several respite programs in collaboration with faith-based communities. We have one program running once a month that started this past summer that you can read more about in a separate article in this newsletter. We have several more groups that are interested but have not started yet. After we get a few programs running, we will create a manual that will help faith communities and/or parents set up similar programs across the state. We will provide technical assistance and materials.

We received two new grants this year. The first was through the Children with Special Health Care Needs Services Program (CSHCN), Texas Department of State Health Services, to provide parent support in the Rio Grande Valley and create a transitions program for parents of teens and young adults. The second grant was one of the Family to Family Health Care Information and Education Center (F2F Center) grants through the U.S. Department of Health and Human Services. TxP2P received state approval to apply for the grant and was awarded one of the ten grants offered through the Centers for Medicare & Medicaid Services. There is only one F2F Center per state and to date there are now 29 states with a F2F Center. We were quite honored to be the Texas recipient of this grant award. You can read more about these programs in articles in this newsletter.
We are also pleased to be involved with the creation of a national parent to parent effort, Parent to Parent USA (P2PUSA). Laura has been on the management team and is now on the Board of Directors for P2PUSA. Their purpose is to ensure that families nationwide whose children have special needs have access to quality Parent to Parent support. This mission is fulfilled by promoting best practices through an alliance of statewide Parent to Parent programs and providing technical assistance to experienced and emerging programs. If you have families or friends in other states, please direct them to this organization for support. Their website is www.p2pusa.org.
So, the staff and Board of Directors of TxP2P are quite busy planning for 2006 and looking forward to another outstanding year! We hope the same for you and your loved ones!

Thanks to advances in medicine, technology and genetics over the past twenty years our children have new opportunities and hope for the future. More children with chronic illness and developmental disabilities are living at home and actively participating in their communities. Through a grant from the Texas Council for Developmental Disabilities, TxP2P has been offering educational opportunities for the past 3-1/2 years to Pediatric and Family Practice Residents and other health care professionals to provide a better understanding of what life is like within a family with a child who has a chronic illness or disabilities. Our trained Medical Education Program (MEd.) Family Faculty accomplish this by widening the residents’ perspectives from the hospital and office to the child’s home and community. They also show the benefit of a partnership between the physician and family to improve the quality of life for the family and the educational opportunities for the child.
To provide a glimpse of family-life, our volunteer parents invite residents into their homes to experience first-hand how they meet the challenge of raising a child with special health care needs. Simultaneously, our volunteer families learn more about how doctors develop early in their careers. Through this opportunity, we hope to foster communication skills that create collaboration and mutual respect between patients, families, and doctors.
The training for residents is based on the needs of the Residency Programs and may include the following:
Family Visits: Our Site Coordinators match residents with volunteer families for in-home visits. Family visits enhance the residents’ understanding of the impact a child with a chronic illness or developmental disability has on family dynamics. They will quickly understand how a physician's referral for nursing care or a feeding pump can help a family stay home together, rather than having one parent in the hospital with the child, and one at home trying to be both parents. Long term visits with one family over several years are an option.
Communication Skills: The residents interview a parent using suggested questions covering such issues as funding sources, discussing difficult topics like a DNR (do not resuscitate) order, and fostering family-centered relationships. The residents are allowed to ask any questions they have and the parents have agreed to answer. This is a unique opportunity for the residents to ask questions of a child’s parent they may not be able to ask under normal circumstances. Parents provide insight from their personal experiences such as receiving a diagnosis, dealing with the emotional and financial aspects of their situation, and the struggles they have to access resources.
Parent Panel Presentations: We individualize the curriculum to benefit participants from a variety of training backgrounds including medicine, nursing, education, psychology, social work, home-visiting programs, and others. We offer parent panel presentations on such topics as accessing community resources, negotiating special education, delivering sensitive news, interviewing skills, understanding stages that parents experience, personal parenting experiences, the Medical Home concept, and Transition from Pediatric to Adult-Centered Health care. Topics can be presented by an individual parent or a panel of parents.
TxP2P trains pediatric residents at Children’s Hospital of Austin and the family practice residents at Blackstock Family Clinic in Austin, both through the Seton Healthcare Network. We also train pediatric residents at Scott and White Hospital in Temple and Texas Scottish Rite Hospital for Children in Dallas , and family practice residents in the Osteopathic Department at the University of North Texas Health Science Center in Fort Worth.
If you are interested in becoming a MEd Volunteer Parent, contact Debbie Wiederhold at 866-896-6001 ( Austin area 458-8600) or Debbie@txp2p.org. If you have a program that can benefit from the trainings we provide, contact Laura Warren at 866-896-6001 or Laura@txp2p.org.

Texas Parent to Parent received a grant this past year to help faith communities find a way to serve our diverse community by providing respite: a ministry which would benefit both families of children with disabilities and volunteers who provided the respite. Materials were adapted from a similar program in South Carolina , and after much planning, editing, preparation and worry, we kicked off our pilot respite site in May at St. John Neumann Catholic Church in Austin . It was helpful that both Colleen Jones and I attend this wonderful parish, and knew how to maneuver the ins and outs of getting a new ministry off the ground.
We handed out information, held a training, and located families in the church whose children would attend. The parents filled out an in-depth notebook about their child, the special needs, and the siblings. We had 17 willing and excited adult and teen volunteers ready for our first night of respite. The parents arrived with our children, our notebooks and our anticipation. The first night was very revealing! We introduced each of our children to the volunteers, told them about our family life and what they might expect from our children. Most of the volunteers listened intently, but we all noticed the growing noise in the room. And then, as if drawn by an inner sense, the volunteers rose, one by one, and moved out into the room while we were still speaking, to play with the kids. The plan was for the parents to move down the hall, have snacks and get to know each other, in easy reach of volunteers with questions and concerns. There were four families, with a total of 12 children. More volunteers than participants led the adults to pair up in twos and take children to the playscape or on impromptu walks around the building. No one was alone, and everyone was having a great time!
I slipped down the hallway with the parents, almost unnoticed by everyone. A potluck of snacks, desserts and even a bottle of wine awaited us. We had a unique chance to visit, undisturbed except by the occasional laughter echoing down the hallway though our open door. We kept it open, just in case! To our surprise, we were not called, not noticed, not needed for almost 2 hours! We relaxed, laughed, chatted, and even played a short game! An unexpected blessing was the support and resources we shared in that short amount of time. Everyone agreed to look for other families who may need some time off as well!
At the end of the night, the volunteers gave our children back, entertained us with funny stories, lessons learned and connections made. They saw us at the beginning of the night tense and unsure if this experiment would work, and now we were smiling, relaxed and ready to be with our children again. Most told us how much fun they had and what a blessing it was to have spent time with our families. But as the summer stretched on and we have all gotten to know each other better, I have to believe that it is the added blessing of seeing the parents return more relaxed, refreshed from our short time away which is bringing our volunteers back. They do see that they have made a difference, brought us respite, and with their hearts and hands, become Christ to us in a very small way.
TxP2P has a Respite Coordinator who has the tools to help your faith community in the same way. If you are interested in learning more, call or email Laura Warren (Laura@txp2p.org) or Shawn Lennartson (Shawn@txp2p.org) at TxP2P (512-458-8600; 866-896-6001) and we can help you and your church find those unexpected blessings from respite.

TxP2P has recently received one of the Family to Family Health Care Information and Education Center (F2F Center) grants through the U.S. Department of Health and Human Services. The F2F Centers are part of the Real Choice Systems Change grants to help those with disabilities exercise meaningful choices regarding how and where to live through the President’s New Freedom Initiative which promotes the goal of community living for individuals with disabilities and long-term illness. The F2F Center grants were created to establish family run centers that provide information, education, and training opportunities for families with children with special health care needs.
TxP2P will assist families of children with disabilities and special health care needs to ensure that their children can continue to live at home or in an integrated community setting whenever possible. We will also assist families with information and resources so that they will be able to make informed choices about the care that their child receives; from who they choose as service providers to the manner in which services are provided. We will also assist with long-term plans and supports for when their child will leave home. We will ensure that families are aware of the philosophy of home and community based supports. We will accomplish this through:

• Providing general information and referrals to programs, services, and benefits that can help children stay in their community and progress in their development; AND providing resource directories to link families with individualized services for a child based on the family’s personal situation, including where they live in Texas, income level, the age of the child and the type of health care needs and/or disabilities
• Providing education and training opportunities for parents, parent groups, service providers and other professionals who provide health care services and resources for children with special health care needs; trainings will be in a different part of Texas each month, ensuring to cover all regions of the state
• When requested by a parent, providing a one-on-one match with a Supporting Parent Volunteer to provide information, referrals, health care information, and emotional support to new parents or parents new to the special health care need or issues
• Developing and promoting our Transition Program for parents of teens and young adults through written information, articles in the newsletter and on our Website, one-on-one support from our Transition Coordinator, and trainings to be provided in conjunction with other monthly trainings
• Providing opportunities for peer support, discussion, and interaction through expansion of our Internet Listservs, our annual statewide parent conference, matches with Supporting Parent Volunteers, and providing technical assistance and advertising for local parent groups while continuing to identify and provide additional avenues of interaction for parents
• Collaborating with existing Family to Family Health Care Information and Education Centers in other states to benefit families; continuing existing collaborations and pursuing additional ones with the Texas Department of State Health Services on best practices and findings from resource dissemination
• Providing opportunities for parents to become parent leaders in health care policymaking and advocacy

We are very excited about starting this new resource for families in Texas. For more information on the grant, contact Laura Warren at 866-896-6001 ( Austin area 458-8600) or Laura@txp2p.org. For training opportunities, contact Jeanine Pinner, Training and Outreach Coordinator at 512-217-3558 or Jeanine@txp2p.org. Parents can call TxP2P at 866-896-6001 (Austin area 458-8600) for more information on the trainings available through the F2F Center.

TxP2P recently received a grant from the Texas Department of State Health Services through Children with Special Health Care Needs Services Program (CSHCN) to provide parent support statewide, with an emphasis on families in the Rio Grande Valley, and to develop a transition program. This is our first grant specifically funding parent support and we are very pleased to have received it. It greatly increases our ability to provide services in Spanish.
We have hired a Regional Volunteer Coordinator to help us reach families in south Texas , particularly Cameron, Willacy, Starr, and Hidalgo Counties . We have a Supporting Parent Volunteer Training planned for Saturday, January 14, in order to increase the number of volunteers in that area. We hope any of you in the area that feel you are ready and able to provide emotional and informational support to another parent will attend. You can contact Leticia Padilla directly at 956-793-9543 or call the TxP2P office at 866-896-6001.
Another important piece of the grant is the development of a transition program, both for moving from Pediatric to adult health care and for families concerned with what their child will do after they age out of the school system. Rosemary Alexander will work as a consultant to help us develop this project, Pathways to Adulthood. We will begin by researching the programs already addressing transition issues in Texas to create a comprehensive listing of services for families available as a Resource List and on our Website Resource Directory. We also plan to provide additional training for any of our Supporting Parent Volunteers who are interested in supporting families during transition to again provide parent to parent support for this very important stage.
We are also exploring the idea of creating a center based on PLAN (Planned Lifetime Advocacy Network, www.plan.ca) that will assist families with transition issues. We plan to work with a few families in the Austin area in 2006 to create a personal network for their child based on the book, A Good Life. The personal network focuses on several major aspects of a person’s life who is at risk of being isolated:

• home vs. house to provide a choice and a sanctuary that is designed to meet the individual’s needs, not the staff’s needs,
• m aking a contribution to provide e very person the right to make a contribution so they are not just a receiver of help,
• ensuring choices for independence, and
• building relationships to ensure that every person has relationships with people in their life that are not just service providers.

We will provide more information over the coming year and at our Annual Parent Conference on this program and other transition issues.

TxP2P recently received a grant from the Texas Department of State Health Services through Children with Special Health Care Needs Services Program (CSHCN) to provide parent support statewide, with an emphasis on families in the Rio Grande Valley, and to develop a transition program. This is our first grant specifically funding parent support and we are very pleased to have received it. It greatly increases our ability to provide services in Spanish.
We have hired a Regional Volunteer Coordinator to help us reach families in south Texas , particularly Cameron, Willacy, Starr, and Hidalgo Counties . We have a Supporting Parent Volunteer Training planned for Saturday, January 14, in order to increase the number of volunteers in that area. We hope any of you in the area that feel you are ready and able to provide emotional and informational support to another parent will attend. You can contact Leticia Padilla directly at 956-793-9543 or call the TxP2P office at 866-896-6001.
Another important piece of the grant is the development of a transition program, both for moving from Pediatric to adult health care and for families concerned with what their child will do after they age out of the school system. Rosemary Alexander will work as a consultant to help us develop this project, Pathways to Adulthood. We will begin by researching the programs already addressing transition issues in Texas to create a comprehensive listing of services for families available as a Resource List and on our Website Resource Directory. We also plan to provide additional training for any of our Supporting Parent Volunteers who are interested in supporting families during transition to again provide parent to parent support for this very important stage.
We are also exploring the idea of creating a center based on PLAN (Planned Lifetime Advocacy Network, www.plan.ca) that will assist families with transition issues. We plan to work with a few families in the Austin area in 2006 to create a personal network for their child based on the book, A Good Life. The personal network focuses on several major aspects of a person’s life who is at risk of being isolated:

• home vs. house to provide a choice and a sanctuary that is designed to meet the individual’s needs, not the staff’s needs,
• m aking a contribution to provide e very person the right to make a contribution so they are not just a receiver of help,
• ensuring choices for independence, and
• building relationships to ensure that every person has relationships with people in their life that are not just service providers.

We will provide more information over the coming year and at our Annual Parent Conference on this program and other transition issues.

I will stray somewhat from my usual legislative update to give you a human example of how policy decisions and budget policies can affect services to people with disabilities.
A recent news segment on WFAA, News 8, in Dallas exposed a horrific story of a young man living in Denton State School. According to the news segment, this young man was brutally beaten and permanently injured by one of the staff hired to care for him. The young man, Hasib Chisty, ended up in a coma and now has quadraplegia. His attacker, hired to provide direct care for the residents of the state school, all of whom have some level of cognitive disabilities, was a drug addict.
Here are the details as described in the News 8 story that resulted from a 4-month investigation. Hasib’s attacker, Kevin Miller, has admitted to the assault. He has stated that there is a “culture of negligence and drug use on the job…the employees on that shift did either crack, powder cocaine, marijuana, oxycontin, hydrocodone, valium…” Miller has testified under oath of a pattern of abuse by staff who “used rubber gloves to abuse the residents.” Miller also testified to the use of metal spoons as weapons to hit residents on the head. He stated in his taped testimony that this was “the tip of the iceberg of some of the examples of abuse here.”
According to the News 8 story, Hasib’s mother was told for more than two years that the injuries were caused by a seatbelt. It’s amazing how people in positions of power often believe the rest of us are so ignorant. While the assault took place in August of 2002, the state school only recently admitted in a letter to Hasib’s mother that her son’s injuries were caused by abuse. If this type of abuse occurred in a private facility, the state would likely work quickly to close the facility down. Unfortunately, this state-owned and operated facility isn’t held to the same consequences.
For those not familiar with the state school system, there are eleven in Texas, housing almost 5,000 individuals with varying levels of mental retardation. The daily rate for these state operated state schools was increased in September to $308.75 per day. The math is easy. The state invests well over $500 million dollars per year for a system that takes away personal freedoms from individuals with disabilities and violates their civil and human rights.
People with disabilities in Texas have long advocated for community-based services that support individuals with disabilities to remain in their homes and communities, services that prevent segregating individuals with disabilities in institutions. Community-based services, while offered in Texas, are not accessible by many who need them due to the “institutional bias” that exists. What is this bias? It’s simple. For an individual with disabilities who meets the eligibility criteria for institutional care, the state will pay exorbitant amounts to segregate that person in an institution – the individual is entitled to this care and the state must provide it. The state will not, however, give that same person an entitlement to community services even if the costs of care are much less. For those who desperately need supports and services, often the only choice available is to be forced into a facility. Currently in Texas, more than 100,000 individuals, both children and adults with disabilities, are waiting for community services – while we spend over $100,000 per person, per year on state school “care.”
This should be unacceptable to those who care about people with disabilities; it should also be unacceptable to all Texas taxpayers when tax dollars support abuse and neglect of some of Texas’ most vulnerable citizens. It is time that the State of Texas takes a serious and comprehensive look at options for consolidating and closing state schools. This should not be about politics and it should not be about local economics. It should be about the rights of individuals. It should be about quality services and humane treatment. It should be about the right of these individuals to live and work and play in their communities. It’s about the right to live free of abuse and neglect.
It’s about human and civil rights because separate is still not equal.
To view the video of the WFAA, News 8 segment, go to http://www.wfaa.com/ shared content/VideoPlayer/videoPlayer.php?vidId=38956&cat