During the 2002 campaigns, as the threat of a deficit was looming, the Governor and other government officials talked about how they would cut the fat out of the budget. Some of them now realize that they were on a wild goose chase.
While estimates of the deficit have gone from $5 to $9.9 billion, the painful reality is coming home to roost. In a state that already has the highest percentage of uninsured population in the nation, and the lowest per capita entitlement spending, while there may be some fat in the budget somewhere, it is not in health or human services.
The combination of a serious budget shortfall and promises to avoid raising revenues, meeting head on with rising costs for health care and other services, and increasing numbers of people needing services, means that something has got to give.
Mind-numbing statistics:
There are no easy solutions to this problem. The state government has proposed a 12.5% budget cut across the board. This cut, combined with losses in some programs of Federal matching funds, and the possibility of cuts from the Federal government as well, means much lower revenue to the state. All state programs would be affected, but cuts in Health and Human Services would fall particularly hard on those already vulnerable.
Much of the following information comes from the excellent report by the Center for Public Policy Priorities, "What Texas Can't Buy with $54.1 Billion," of which this is a brief overview. For greater detail, see http://www.cppp.org/index.html, go to Policy Areas, to State Budget & Taxes, to State Budget, to Policy Pages, for the full article. Of course, the budget situation is fluid until the final version is passed, but the crucial decisions are being made now.
In Medicaid and CHIP (Children's Health Insurance Program) alone, nearly 700,000 people would lose services by 2005. While CHIP is predicted to survive in some form, deep cuts are considered likely. Also under consideration is trimming benefits, such as dental care, eyeglasses, hearing aids, durable medical equipment, treatment of mental illness, speech therapy and physical therapy.
In Dallas County for example, cutting Medicaid by 12.5% would cause 38,000 low-income people, most of them children and pregnant women, to lose their health insurance. Estimates are that Parkland Health and Hospital System would be left $60 million short, and Children's Medical Center of Dallas would be $50 million short. However, the largest amount of money would come from a proposed 33% decreased reimbursement of Medicaid providers, doctors and hospitals, paid by the Health and Human Services Commission for providing care. Health administrators worry that at those rates of reimbursement, doctors would leave the children’s' health care programs, causing children to loss their doctors. The costs of these cuts are amplified by the loss of matching federal funds, about $1.50 for every $1.00 paid by the State. The cost to Dallas County is estimated to be about $700 million. The overall loss to the state of Texas is expected to be $1.6billion in state funds, plus at least $2.3 billion in federal dollars, for doctors, hospitals, clinics, home health care, etc.
The Texas Department of Health would reduce services for Women's Health, Children with Special Health Care Needs (CSHCN), Early Periodic Screening, Diagnosis and Testing (EPSDT), and numerous public health programs, such as vision/hearing screening. Some programs would be eliminated completely, including the Epilepsy Program and Children's Heart Outreach.
A 12.5% decrease in the Department of Human Services (DHS) budget would mean severe cuts in the Community Care programs, forcing some people from their communities into nursing homes, and cutting cash assistance and other services to Texas ’ poorest children, receiving TANF (Temporary Aid to Needy Families).
The Texas Department of Mental Health and Mental Retardation (MHMR) budget, already threadbare, would face cuts that would affect services to about 33,000 people, including more crowded residential facilities and hospitals, and reduced funding for Children's Mental Health Community Centers. Texas currently ranks 46 th in per capita mental health spending, and the current MHMR budget, according to the Texas Observer, can only serve a third of its present "priority population," leaving hundreds of thousands of people without services. For example, the Waco Center for Youth, the lone statewide mental health hospital for children, has a six-month waiting list for one of its 81 beds, and the other regional state hospitals are 98 percent full and nearly impossible to get into. While both the population and the need for mental health services have continued to grow, the legislature hasn't increased funding for children's mental health in nearly 10 years.
Because of long waiting lists for services, s everal state agencies are already facing a lawsuit by the Arc of Texas and Advocacy, Incorporated. The lawsuit against the state is an effort to stimulate development of Medicaid waiver services for the more than 20,000 Texans with mental retardation and other developmental disabilities who are on waiting lists for waiver services. (Medicaid waiver services waive the requirement that the overall household income meet Medicaid guidelines, and instead use the child's income, usually little or nothing, as the criterion.)
Agencies being sued for inadequate current services are:

• The Texas Health and Human Services Commission in its role as the state’s Medicaid agency;
• The Texas Department of Mental Health and Mental Retardation, which operates the Home and Community-based Services waiver (HCS) serving people with mental retardation;
• The Department of Human Services, which operates the Community Living Assistance and Support Services (C.L.A.S.S.) Medicaid waiver program serving people with developmental disabilities other than mental retardation.

What does that mean in the lives of individuals, families, and children?
How does this avalanche of statistics look from the perspective of the families who depend for assistance on these services? One program, C.L.A.S.S., (Community Living Assistance Services and Supports), a Medicaid waiver program, provides funds for helping families care for a family member at home. Parents talk about what it has meant to their families.
After her daughter was injured in a car accident, one mother knew she had to be sure her daughter remained eligible for Medicaid to get the medical care she needed. To protect her daughter's eligibility, the parent had to do anything she could, including keeping her income within the guidelines, to keep 'qualifying'. She even refused to marry the man who had stood by her for many years. But because Medicaid did little to help her care for her daughter at home, she applied for C.L.A.S.S.
Since they became eligible for C.L.A.S.S., her daughter qualifies for assistance that makes it much more possible for her to live in her own home, including an attendant, modifications to make her home accessible, and various types of therapy, none of which are covered by Medicaid. Since eligibility for C.L.A.S.S. is determined by her child's income, the parent was freed from having to take a vow of voluntary poverty.
There are many benefits, and she finds it hard to choose the most important one. "Today, I can work almost whatever hours I want and for the best pay I can get! But is that more or less important than the fact that our attendant who comes everyday from 4-10 pm allows me the freedom to do that? How is that more important than the therapies my child receives weekly that enable her to progress daily? Where does marrying the man who still stands by me fit in? I almost forgot the $15,557 van modifications that almost no one other than a Medicaid waiver program pays for!" In other words, she does not have to choose between caring for her child at home and living her own life. She has seen life before and after community living assistance, and she would never want to go back.
Another parent talked about the major changes in the life of her family when her son, who has autism and requires 24-hour-a-day care, qualified for the C.L.A.S.S. program. With attendants, who could provide him with the very high level of attention he needs, the parents and siblings no longer had to focus exclusively on caring for their son, and the family could again function as a family.
She has seen some important changes. "He's become potty-trained since the attendants started coming. He'd worn diapers for years. That was a major accomplishment!" He's learning other skills, including communication, and is more independent now. His brother likes the fact that with the help of attendants, the family can take him to baseball games, out to eat, or to the grocery store, things they could not have done before. Without that help, he would be much more isolated from his community, and even in his own family. These new skills will help him become more independent in the long term, and make him better able to care for himself as an adult, hold a job and contribute to society. His progress will be important to his siblings also, because, as his mother noted, after his parents are gone, they will have the responsibility of supervising his care.
Having now lived with the assistance of skilled attendants, the mother would never go back to life as it was before, although her family would have to go into debt to do it. Although they have the option of putting their son in an institution, it is a choice they would never make. She has worked with people who were in institutions, and now are living with assistance in their own homes, and knows too much about their dread, even threats of suicide, at the thought of going back to an institution. So, although the responsibility is a large one, they are determined to keep him at home. Now, she, her husband, their other children, and her son with special needs, all have a more satisfying life as individuals, and together as a family, and a more positive future.
Another parent with a child who needs intensive, round-the-clock care, talks about how her family's Medicaid waiver program has affected their lives. "The most helpful aspect of our Medicaid waiver program is the peace of mind it brings. Our daughter is now on 9 medications, has 8 specialists, uses 3 positioning devices and seems to develop a new diagnosis every two years. She is only 12, and I have a bad feeling that if we were not on the C.L.A.S.S. program, our family situation would be very different. Either we would be bankrupt or my daughter would be living in a nursing home. But because we have C.L.A.S.S., she is able to have all the medications she needs. She can see the pediatric specialists as needed, and is able to get the devices she must have to live in our community. Her siblings can interact with her on a daily basis and she can go to the school of our choice. We, as a family, can go on outings with her, or we are able to leave her in the care of an attendant if her health is poor. My husband can run his business and I have the opportunity to be involved in all my children’s educational experiences. We can be contributing members of our neighborhood, schools, church and community. We volunteer and give of ourselves to worthy causes. None of this would be possible if we had to scrape by, work three jobs, or not have Jessica in our lives." Just as the parents before her did, she knows how important the benefits are to the whole family. "This Medicaid waiver program has kept our family intact and vital."
What's the bottom line for children and families?
As an administrator of Children's Medical Center in Dallas trying to cut back his budget reported, there was no fat in his budget to trim: "What we're down to now is amputation." His comments could apply to almost any program affected by the State's proposed budget allocations.
All of the programs under the knife serve real human beings. There will be no painless cuts. Every child needing Early Childhood Intervention will have a greater distance to go without it. Every child who goes without medical care, EPSDT (Early Periodic Screening and Diagnostic Testing), or eyeglasses or a hearing aid, risks having a small problem grow into a major one. Children with mental illness who do not have the care they need may end up in Child Protection Services or the mental health unit of the prison system. People deserve the support they need to succeed in living in the community. Loving families, determined to give their children the best care possible, in the nurture and security of their own home, need the services that will protect the integrity of the family and support their determination to do so.
For more information on the proposed funding cuts and ways to contact your legislators, see the article, “Legislative Update”, by Colleen Horton on the next page.

Where do I begin? Anyone who reads the newspaper or watches the news on TV knows of the incredible budget crisis Texas is currently facing. Over the past 6 weeks, the House Appropriations Committee and the Senate Finance Committee have been holding hearings on the vast number of state funded programs including education and health and human services programs that provide supports and services to children with disabilities.
While there are thousands of individuals with disabilities (adults and children) on various waiting lists –waiting for community-based services – there has been little talk this session of funding new slots. The discussion at the Capitol has been “where do we cut.” The following is a brief snapshot of some of the proposed policy changes to date. This is not by any means meant to be a complete list, nor is any of these proposals finalized. This is simply intended to give you an idea of what we may be facing.
Eliminate eligibility for more than 16,000 individuals receiving community-based services through Primary Home Care.

• Elimination of In-Home and Family Support Programs at both Texas Department of Human Services and Texas Department of Mental Health and Mental Retardation.
• Reduce the Consolidated Waiver Program from 200 individuals to 125.
• Eliminate services for more than 34,000 in the Frail Elderly Program.
• Change eligibility for the Children’s Health Insurance Program from 200% of federal poverty level to 150%.
• Reduce the total number of CLASS slots.
• Change Medicaid eligibility from 300% of the SSI level to 100% of the SSI level. This would make more than 41,000 individuals currently receiving long term care services ineligible. This would also affect eligibility for waiver services
• Reduce Medicaid provider rates by 33%. This would significantly reduce (if not eliminate) access to medical professionals and other providers.
• Eliminate drug coverage for all Medicaid recipients (including those receiving waiver services) except pregnant women and certain nursing home residents.

All agencies will be affected. All programs face possible reductions. What can you do?
It is vitally important that those families whose children currently receive waiver services and those “waiting” for services call members of the House Appropriations Committee and the Senate Finance Committee. Tell them how important community-based services are to your child. Help them understand that community services help to keep children at home, help keep families together, and help to prevent costly institutionalization of our children.
Time is truly running out. It is your responsibility to help save these programs for children and adults with disabilities. All members of the legislature can be reached by calling the Capitol Operator at 512/463-4630. Start making calls today! It is the only thing that will make a difference.

Who to Call…

House Appropriations Subcommittee on Health and Human Services

Rep. Talmadge Heflin, Chair
Rep. Vilma Luna, Vice Chair
Rep. Arlene Wohlgemuth, Chair, Subcommittee on Health & Human Services
Rep. Craig Eiland
Rep. John Davis
Rep. Suzanna Gratia Hupp
Rep. Dawnna Dukes
Rep. Vicki Truitt

Senate Finance Committee

Senator Teel Bivins, Chair
Senator Judith Zaffirini, Vice Chair
Senator Robert Duncan
Senator Jane Nelson
Senator Kip Averitt
Senator Gonzalo Barrientos
Senator Kim Brimer
Senator Kyle Janek
Senator Jane Nelson
Senator Steve Ogden
Senator Florence Shapiro
Senator Eliot Shapleigh
Senator Todd Staples
Senator Royce West
Senator John Whitmire
Senator Tommy Williams

Please remember, if you’re not part of the solution, then you’re part of the problem.

Every parent at one time or another needs and expects to receive respite from daily child rearing. This brief time away provides parents with an opportunity to relieve stress and to return with a renewed capacity to enjoy and nurture their children. Respite care for families of children with disabilities or chronic illness is a truly essential piece of a very complicated life. In national studies, respite care is the need most frequently cited by families of children with special needs and one that is very hard to find. These families care for their child 24 hours a day, 7 days a week, most times with very little support. Respite allows the primary caregiver and family members to step back from the consuming demands of care and take a little time for themselves. With respite, the primary caregiver is better able to continue to provide appropriate care required by the child over many months and years.
Texas Parent to Parent (TxP2P) has received funding from the Justin Paul Foundation and has submitted a grant to the Robert Wood Johnson Foundation specifically targeted for faith based respite programs. While TxP2P will be integral in providing the support and training to get the project off the ground, respite cooperatives will eventually be self-sustaining projects administered entirely by the churches/faith communities involved. Programs will be tailored to the needs of the churches and families involved. TxP2P will continue to be involved as requested to provide technical assistance, but the intention is to build a program for and by the local faith communities to avoid creating a separate bureaucracy or unnecessary control or regulations.
Texas Parent to Parent is currently working with three churches in Travis and Hays County to create respite cooperatives. We plan to expand into Williamson County soon and then to expand the number of respite cooperatives available in the three county area. Our goal is not only to create respite opportunities for families but also to encourage the inclusion of families of children with disabilities and chronic illness within faith communities.
Texas Parent to Parent will use the funding received to hire a Respite Coordinator who will help create the respite cooperatives and then provide continuing administrative and technical support. TxP2P will work with the faith communities to recruit volunteers to provide respite care in cooperation with the families of children with special needs. The volunteers will receive training in caring for persons with disabilities and chronic illness and a briefing by each parent on his or her child’s own particular needs and interests. Family members will take turns staying for the respite event until the volunteers and families are comfortable with volunteers caring for the children.
Each respite cooperative will be designed by the church/faith organization and parent representatives with the assistance of TxP2P. The decisions to be made will include who will be involved, how often an event is offered, how many children can be served, location and other logistics. Each cooperative will be different. Each faith organization will decide what piece of the cooperative they want to provide: location for respite event, volunteers and/or funding as needed.
As with our Project DOCC Program (medical resident training program), TxP2P will create the respite program with the faith community in the Austin area and then replicate it across the state. If you would like more information or to help with this effort, please contact Sue Regimbal with Texas Parent to Parent at 512-458-8600 if local to Austin or our toll-free number 866-896-6001, or email her at Sue-txp2p@sbcglobal.net)

Written by Helen Laverty, a registered nurse who has worked with people with learning disabilities for twenty years and Mary Reet, a pediatric nurse with similar experience, this book was developed in response to a practical need - quality respite care for children with special needs and their families. Offering a new approach centered on the child's abilities rather than disabilities, this book employs a positive focus on emerging levels of independence in disabled children.
Laverty and Reet have developed a model, which they call “Hello, this is me”. This model provides a method of assessing and planning care for children with a variety of needs. The authors emphasize a partnership between families and caregivers, which enables children and parents to make their voices heard when planning respite care, so that each child's unique needs can be met. This model allows caregivers to calculate the amount of support each child will need, but more importantly, it ensures that respite care is not just a break for families but also an enjoyable experience for the child.
The book demonstrates the “Hello, this is me” model with actual case studies and assessment tools. This innovative, clearly explained approach to respite planning would be invaluable to both respite providers and families in need of respite care.
London, Jessica Kingsley Publishers, 2001. 171 pages. $24.95. Available for purchase at http://www.jkp.com

The Children’s Association for Maximum Potential (C.A.M.P.) is looking for future community leaders to participate in an exciting new program – the 2003 Texas Youth Leadership Forum (YLF) for young persons with disabilities. The YLF, which will be held at a Hill Country Conference Center in San Antonio, is a fun, educational, vocational awareness program that enables young people to learn from each other and from successful adults with disabilities who are recognized leaders and role models.
Modeled after a national youth leadership program that originated in California 12 years ago, the first Texas YLF will include 30 young people with disabilities, ages 16 to 22, from across Texas. Forum participants will be selected through an application and interview process and include applicants that want to be leaders in the community who have demonstrated academic success, community involvement, leadership potential, and an ability to interact effectively with other students.
The Texas YLF participants will attend a weeklong session, from Sunday, July 27 to Friday, August 1,2003, in which they will develop a “personal leadership plan.” This plan will help them identify and deal with barriers to personal and professional success. Participants will also collaborate with other young people who have leadership qualities, learn more about assistive technology, work on building self-esteem, and learn about the history of disability as a culture.
The YLF is FREE for individuals who are selected to participate. The program is offered by C.A.M.P. with financial support provided through the Texas Council for Developmental Disabilities (TCDD), a 30-member board dedicated to ensuring that Texans with developmental disabilities have the opportunity to be independent, productive and valued members of their communities and to improve the community's understanding of disability issues.
If you know a young person who would benefit from this program, please encourage them to call for an application. For additional information and to request an application, please call Jennifer Murphy or Sandie Gonzalez at (210) 292-3566 or (210) 292-3574.

I sent my son who has mild cerebral palsy, speech delay and sensory issues, to a week-long day camp for the first time when he was 6 years old. It did not go well. Jason cried each morning as they pulled him up the road to camp, even though he had his best friend with him. I have never been able to get him to try it again, even though I know, once he could no longer see me, he had fun. I have talked to a lot of people about the dilemma of sending their child with disabilities to camp. For some, it is as good as it gets; for others it’s a disaster. Here are a few stories I collected in the hope that they might help with this very hard decision.
**I was so apprehensive about sending Kaly to camp!  She could not prevent anything bad from happening to her nor could she then tell me (or anyone else) what had happened!  Besides that if I took her and dropped her off at some strange place with people she didn't even know, surely she would think I had abandoned her!  How would either of us have a good time!  After years of filling out pieces of the application but never quite all of the form, I finally "sent" Kaly off to C.A.M.P. Camp.  Her camp goal was to understand that she was on vacation and it is suppose to be fun?  My friends lined up activities to keep me occupied during the "ordeal" and I had to admit that I had a pretty good time! 
The day came to pick Kaly up and I am not sure who was happier to see whom, but we were both pretty happy!  Kaly had taken a camera to camp and we put the pictures in one of her many photo albums.  She talked endlessly about riding the horses and her new friends.  One day she was looking through the photo album and said "Mom, I want to go there- and ride the horses, too."  So, off again she went to camp but I planned my own activities!  That year, Kaly came home saying "Mom, vacation is fun!"  This will be the 5th year she has gone to C.A.M.P. Camp and we both love it! 
**I only have one story about camp for my daughter Amy, (autism, epilepsy, severe mental retardation).  We took her to our local MHMR camp at an old girl scout camp.  Amy was about 8 years old and it was a one nighter.  They assured us they would call if there was a problem.  Amy's epilepsy level at the time was about 250-300 absence seizures lasting 5 to 10 seconds apiece.  This caused her to forget everything constantly.  Evidently, during the night, she kept waking up to unfamiliar surroundings and people, and was completely terrified - with screaming and crying and wanting to get away.  They would calm her down and she would go to sleep again, only to reawaken and go through the whole process again.  This evidently happened about four times during the night.  They never did call us. 
When we got there the next morning, she and her FOUR attendants were exhausted, practically hysterical and couldn't wait to get away from each other.  After that, MHMR asked that we not bring Amy for any outings again, as they could not afford four attendants for one child!  It was a completely traumatic experience for her, the MHMR people, and us.  After that, we were fairly well ostracized from MHMR activities for her, ourselves, and her siblings.  This made for a very bad time for our family and I would caution anyone with a child with autism and epilepsy to be careful about this kind of activity.
** Camp Discovery, also known by the kids as "skin camp", is safe fun every year!  Tom has gone for 3 years in a row now and every time we pick him up from the airport, he says, "I wish I could live at camp.  We don't focus on each other's skin.  We just have great fun!!!  It is the only place in the whole world where I feel normal for one glorious week!" The youth camp for Camp Discovery is held at Cross Lakes , Minnesota . Kids, ages 10 to 13 years old, go to this one.  The teen camp is in Pennsylvania and has 14-17 year olds.  The staff all have some type of skin disorder too.  And many of the staff are doctors, nurses, medical residents and former campers who are now young adults. There is talent night, swimming, boating, canoeing, crafts, campfire songs, horseback riding, tubing, archery, water skiing, and a boat trip to Dairy Queen. It is a 3 to 5 hour bus ride from the Minneapolis Airport but it is more than a ride.  It is more like a mobile party in the bus!  While waiting for the gang to arrive from many different flights, the staff tease the campers with mysteries/riddles to solve. They teach the kids cool jokes to tell their friends when they get home.  They play card games, eat, and horse around and chat all while waiting at the airport.  And finally Tom comes home with a ton of freebie stuff: tote bag, toys snacks, mini clocks, calendar, etc.  All say Camp Discovery on them - great souvenirs!  A month later the Camp Director , Dr. Julie, sends photos of all the fun had by Tom.  It is a very loving environment.  Tom almost hates to see his condition improve because he may not qualify for camp again this year.  But he wouldn't want to bump a sicker kid out of camp fun.
**Although Jessica has been going to Camp C.A.M.P. for three years, she has yet to stay healthy through a whole week of camp, but she has never been sent home! That is an amazing sentence because there are no finer, more committed people than those at C.A.M.P. They toughed it out; keeping Jessica at camp, getting her medications, putting her in the infirmary at night, and still had her out on a horse, in the pool and in a canoe. Yes, camp has been a good break for us, but it has been invaluable to Jessica, because they took her illness in stride and kept her striving for fun. That is what we needed camp to be for Jessica.
If you would like to talk further with any of these moms, call us!

"The milk that you sent to my son saved his life. You would never know how you helped us, he was so sick and little and we all know the big difference that breast-milk makes. We would never finish expressing our gratitude for all your help, please give my thanks to all the people that make this miracle possible. And never forget that your society helped save my son’s life.” –Premature recipient’s mom
The above testimony was sent to the Mothers’ Milk Bank at Austin (MMBA), from the mother of a premature infant who received human donor milk from the MMBA. The Mothers’ Milk Bank at Austin is a nonprofit organization dedicated to the provision of safe human milk for premature and sick babies. Premature infants are six to ten times more likely to acquire life-threatening infections during the neonatal period if fed infant formula instead of human milk. Nonetheless, not all mothers are able to provide sufficient breast milk for their infants during this critical period, leaving commercial formula as the only alternative. The MMBA fills this need for human milk.
The concept of the Mothers’ Milk Bank at Austin began in 1998, when two Austin-area neonatologists, Dr. Audelio Rivera and Dr. George Sharpe, gathered local health care providers and community members together to discuss the possibility of creating a bank of donor milk. The physicians described differences seen in the babies in the neonatal intensive care units depending on whether they were fed formula or breast milk – differences in rates of infection, and, in time spent in the NICUs. As is seen in the medical literature, a link between the miracle of mothers’ milk and the miraculous lives of premature infants was made.
By 2002, the MMBA had grown to serve infants in NICUs in 13 hospitals in and around Texas, as well as about 32 infants at home. Hospitalized premature and ill infants take priority, but outpatients suffering from failure to thrive or malabsorption syndromes, cardiac conditions, immune disorders, or renal disease also are served by the milk bank.
MMBA collects human milk from healthy donor mothers who have more milk than their own infant needs. Safety of the milk is provided through screening of medical and lifestyle histories, blood tests, microbiological testing of milk samples, and pasteurization of pooled milk. Staff at the milk bank work with lactation consultants, nurses, and physicians to educate both the public and health care providers about the benefits of breast milk. The milk bank also provides advice to mothers who are breastfeeding their own infants. Donating milk can be a very rewarding experience!
“It was such a blessing to find an organization such as yours. I am very happy that, through you, I can help other tiny babies on their way to a healthy, happy life. Donating my extra milk gives me such a sense of satisfaction and I am very proud to say that I do so.” –Donor
Many people make the efforts of the MMBA successful! Donors voluntarily pump and store their milk according to the Milk Bank’s guidelines, avoiding medications, herbs, and other dangerous behaviors. Volunteers from organizations such as the Junior League of Austin, and individuals of all ages serve to pick up milk from remote drop-off centers, call donors with reminders for paperwork, and handle filing and other paper needs in the office. Health care providers recognize when their infant patients will benefit from milk, and work with the parents or hospitals to obtain milk for the baby. The team efforts of these groups help change the outcomes for these smallest members of our population.
“On a personal note, we would like to thank all of you so very much for providing us with ‘mommy milk’. We truly believe that she is the healthy, thriving little girl she is today because of your enabling us to provide her with what God intended and I could not produce. Our most heartfelt thanks to all the mothers” –Recipient’s mom (baby was 2 lbs. 6 oz. at birth)
If you would like to be screened for either donor or recipient status, call (512) 494-0800 and ask for Kim. Volunteers can call the same number, but ask to speak with Sarah Emery.  We are open daily, from 9:00 a.m. to 5:00 p.m. , with the exception of Fridays when we close at 1:00 p.m.

Kid & TeenSAFE, located at SafePlace in Austin, can provide a 1-1/2 hour presentation for teachers, parents and family members to help them recognize and prevent abuse against students with disabilities. The training includes discussion of incidence of abuse, risk factors for our children, signs of abuse, responding to abuse disclosures, reporting abuse and personal safety strategies.
Another service Kid & TeenSafe can provide is 3 to 4 customized sessions for students with disabilities. These sessions will include discussions on emotions, touches and words, medical terms for body parts, fun and hurtful secrets, harassment and bullying, personal safety rules, and healthy relationships.
Contact Peggy Martin, Kid & TeenSafe Educator, for more information or to schedule a training, at 512-356-1568 or email her at pmartin@austin-safeplace.org The trainings are free except for travel expenses which are negotiable.
You might also want to check out the website for Disability Services ASAP (A Safety Awareness Program) - austin-safeplace.org/programs/disability

A farmer had some puppies he needed to sell. He painted a sign advertising the pups. And set about nailing it to a post on the edge of his yard. As he was driving the last nail into the post, he felt a tug on his overalls. He looked down into the eyes of a little boy.
"Mister," he said, "I want to buy one of your puppies."
"Well," said the farmer, as he rubbed the sweat off the back of his neck, "These puppies come from fine parents and cost a good deal of money."
The boy dropped his head for a moment. Then reaching deep into his pocket, he pulled out a handful of change and held it up to the farmer. "I've got thirty-nine cents. Is that enough to take a look?"
"Sure," said the farmer. And with that he let out a whistle "Here,Dolly!" he called. Out from the doghouse and down the ramp ran Dolly followed by four little balls of fur.
The little boy pressed his face against the chain link fence. His eyes danced with delight. As the dogs made their way to the fence, the little boy noticed something else stirring inside the doghouse. Slowly another little ball appeared, this one noticeably smaller. Down the ramp it slid. Then in a somewhat awkward manner, the little pup began hobbling toward the others, doing its best to catch up.
"I want that one," the little boy said, pointing to the runt.
The farmer knelt down at the boy's side and said, "Son, you don't want that puppy. He will never be able to run and play with you like these other dogs would."
With that the little boy stepped back from the fence, reached down, and began rolling up one leg of his trousers. In doing so he revealed a steel brace running down both sides of his leg attaching itself to a specially made shoe.
Looking back up at the farmer, he said, "You see, sir, I don't run too well myself, and he will need
someone who understands."

The world is full of people who need someone who understands!
Don't be ashamed to be the one who understands!

We want to get as many resources on our Website Resource Directory as possible so parents can find the services and support they need. Please take a look at the Directory for your area and/or county at http://www.main.org/txp2p/Resources.html. If we are missing services that you are aware of or have the wrong info, like phone numbers, address, etc., please let us know. Either call Laura, Tammy or Sue at 866-896-6001 or 512-458-8600 or email Tammy-txp2p@sbcglobal.net. You will be helping other parents by reducing their search time.
ALL PARENT GROUPS: Please register with us so parents can find you. Go to http://www.main.org/txp2p/Groups.html to register on-line or call us at the above numbers.

Ahhhh! Summer is here! Time to sleep in late, watch the flowers grow and enjoy the children playing quietly at our feet while we sip our iced tea. NOT! Let’s be honest here, we are all hot, tired, swamped with to-do lists, and the kids are pulling the house down around our ears all the while singing out, “We’re Bored!” Even my non-verbal child with cerebral palsy gets that look on her face like she is bored of vacation already. What is a Mom to do? We asked our veteran parents this question and here is some of their infinite wisdom, condensed into sound bites for the summer stressed parent.

Hint #1: Summer success seems to depend on a schedule. Almost every parent stressed the fact that establishing a routine was of primary importance.

• Build a routine: Monday is library, Tuesday is swimming, Wednesday is a community outing such as the zoo, a visit to the pet store, Thursday is friends come over, Friday is rent a video day, etc., etc. Think about what your child will find interesting and that you can tolerate. Build a schedule or calendar and make it very visible. This gives everyone something to look forward to and helps parents avoid the guilt trips that their children are not getting enough community exposure, etc. Ronnie Schleiss
• A schedule for time at home: I've always had to do this for Jake to save my own sanity and to keep him involved in more than the one thing he is obsessed with at the moment. I try to design the schedule with him, but I have strict parameters of what I'm willing to accept and what I'm not. Jeanine Pinner
• I usually use Spring Break as a trial run for how I want to plan the summer (since Michael needs a lot of structure): I can see what is realistic or not. Chances are, if I can't do something over Spring Break, I probably won't do it over summer. I also think, as Michael gets older, to arrange as much help as possible so that I am not exhausted when school starts in the fall. Finally, if our children are old enough or can communicate, give them as many choices as possible. Odds are that if they choose the activities, the day will go much smoother. Joanne Weaver

Hint #2: For a fun filled, cool summer, try swimming. Every community has a pool nearby, find out the hours and read on.

• Swimming is a regular after-dinner activity. The pool is not crowded so its peaceful, we don't have to use sunscreen, and the water is good for Maverick in so many ways--calming, proprioceptive, socializing, exercise, etc. Denise Sonleitner
• I try to schedule one play date per week to come swim at our house. Not this year, but in years past, we'd take Tom to Schlitterbahn about three or more times with a season pass. Val Sutorius
• Swimming lessons at Austin city pools (very cheap and very valuable)--they got us both out of the house, Jake learned a lot, got some exercise, some vitamin D/K (or whatever you get from the sun), and then he and I played together in the water. We've usually managed to organize a multi-family camping trip to a local state park at least once during the summer. Spend a couple of days fishing, reading, eating, playing on jet-skis, etc. Jeanine Pinner
• We go swimming for at least an hour every day. Rilla Chaka

Hint #3: Libraries, summer school and reading programs are more ways parents can fill the hours of long hot summer days.

• Because Jessica is confined indoors due to her seizures for most of the day, we go to the library once a week for story-time, and rent her books on tape. She loves to listen to them while lying in bed. There are many times that her two little sisters join her on the bed and they all listen together. Patty Geisinger
• Gary (my husband) usually home-schools Tom in one subject that he needs to improve on like Math or Reading . So, Gary takes Tom to the Library about every 2 weeks to get a new book. Or we look up the space station orbit schedule on the NASA.gov website, then go outside, and watch it go overhead for three thrilling minutes every so often. One Mom I know who home-schools year round has theme week at home. One week is Egyptian and they not only study the culture but also prepare an Egyptian meal for dinner one night. They dress in costume and play a game from that country. Val Sutorius
• My kids like to read but don't always want to stop playing to do it. So, we came up with some unusual places to read and wrote them on Popsicle sticks, such as in mom's garden, bathtub with pillows, under the dining room table like a cave, that sort of thing. Then each day at reading time, we draw sticks to see where we go for an hour (including mom)! They like the variety and the unusual nature of it and the surprise. Rilla Chaka
• I recommend working with your school district to create appropriate Extended School Year (ESY) programs, including inclusive settings with Extend-A-Care, regular summer school in elementary or middle school, or career exploration/pre-voc community settings in high school. (We have had ESY every summer since Trey was in 1st grade--we don't always go every day for the entire time, but we do at least half of the time.) We used the extra time to focus on one particular area of need, such as private reading and math tutoring--this summer it is Auditory Training for auditory processing. Jill Haas
• Local bookstores and libraries have reading programs that can be a lot of fun.  In years past, Barnes & Noble offered numerous free books for kids who reached certain reading levels during the summer. Jeanine Pinner

Hint #4: Movies, TV, board games, and inside fun are also some neat ways to while away the sunny days.

• Have "Board Game Days" where friends come over every Wednesday from 1-3 to play Clue, Monopoly, etc. I have gotten six kids and their parents to agree to try to come every week, but anywhere from one to six shows up (average of 2). Most of the kids are latchkey kids who enjoyed a chance to get out of the house and the parents liked it, too. Or we watch old movies like The Three Stooges and Laurel and Hardy. Rilla Chaka
• Several of the larger movie theatres have their children's summer series one or two days out of the week. The movies are free and start showing around 10 a.m. It's gotten pretty popular the last few years so I recommend you get there early. I use it as a reward system for the boys and a cheap outing too. M. Helen Esqueda

 Hint #5 : And finally, we have camps, museums, the lake, and other outside activities

• One week of Skin Camp and one week of Vacation Bible School take a big bite out of the 84 days of summer vacation. This summer I want to spend at least one day at U.T. at the refurbished Harry Ransom Museum . At least it will be cool inside so it is probably a good 11 am – 3 pm activity. Val Sutorius
• Camp C.A.M.P. takes Jessica every year even though she seems to gets sick as soon as she gets there. They have an infirmary and she does just fine in there, but this year I’m sending her on antibiotics so she can have more fun and participate in all the activities. Patty Geisinger
• We will have community outings to museums, libraries, services (such as dry cleaners, florist, pharmacy, gas station, etc.) and talk about what you do there and who works there. We are starting a career journal as part of ESY this summer and will continue to add to it. We’ll also have family vacations and go to recreation center programs (we did Austin Recreation and we know parents who have had good luck with McBeth Recreation Center ). And we’ll have his big sister haul him around with her friends to the mall, bookstores, restaurants, movies, etc. Jill Haas
• We have picnics in the yard (or what Halla and Annie really like, picnics and camp-outs in the family room with blanket-tents), go for a drive looking at the pretty houses (a.k.a. mansions) while eating ice cream, or go to Half-Price Books and stock up. Linda Thune

Although we have only listed a few ideas for summer, many of these parents had many similar ideas. I hope that you found just one thing to try this summer in your community. Although some of these places are in Austin , it does not mean that your community does not have them. Look around in your libraries, museums, and summer school programs. I bet you can find tons of fun things to do to make the summer go smoothly and successfully. And as one mom so eloquently put it “But mostly, summer is about getting to sleep late and eat lunch when we want to. That has to be my favorite part!!” Val Sutorius
So, perhaps we can sleep late, one out of three ain’t so bad.

I get many phone calls from parents who are struggling with their early childhood program, school, or insurance company to get the services they feel their child needs. I decided to ask the experts on these subjects – parent professionals who deal with these questions every day – people I go to or send parents to when I don’t have the answers. It finally dawned on me that I could get the word out to more parents by putting it in the newsletter. I hope it helps!

When Working with an Early Childhood Intervention Program
By Susan Prior, Information & Training Support Coordinator, ECI State Office

If your child is receiving services from an Early Childhood Intervention (ECI) Program and you are not happy with the services or feel your child requires more, follow the steps listed below to help resolve your concerns:

• When your child enters the program, you and your team members from your program will develop an Individualized Family Service Plan (IFSP) of what the services will look like based on your child and family needs. You are a very important part of that team and you have the right to receive answers to any questions you may have. You need to ask!
• Sometimes parents and ECI staff disagree. It is important for you to talk with the person you disagree with. If that is not possible, talk with your service coordinator and/or program director. If you are not satisfied, you can call the State ECI office at 1-800-250-2246 and ask for help resolving your disagreement.
• You have the right to ask for a change in your IFSP whenever your child has met a goal, isn’t progressing or the plan is not appropriate. Your program is required to review your IFSP with you every six months and more often if needed.
• Most importantly, keep communication going with your program.
• Know your rights! Refer to your ECI Handbook or call the ECI State Office at 1-800-250-2246 if you have any questions.

When Working with your Child’s Special Education Program in Your Local ISD
By Rosemary Alexander, PhD, Parent and School Support Team, Austin ISD

Having your child covered by IDEA, the federal law that mandates special education services, is a great opportunity. Your child has the chance to receive the supports and individualized education he or she needs while you, the parent, have a chance to be involved in the decision making process regarding your child’s educational services. IDEA provides you with a way to be a part of the educational team and voice your concerns, what might work best to help your child succeed, and your vision for your child’s future.
However, to take advantage of these opportunities, parents must know about IDEA, understand the decision-making process, and learn how to be successful advocates for their children. Here are a few pointers for being an effective part of the school team:

• Stay in communication all year.

Get to know your child’s teacher through chance encounters, phone conversations, and informal meetings.
Set up a regular communication system, such as a notebook, a checklist, regular phone calls, etc, that keep both school staff and family informed about routine concerns and events.
Volunteer at the school or ask how you can help from home.
Acknowledge through small gifts or treats that you appreciate the efforts of school staff.

• Get ready for IEP meetings (called ARDs in Texas ).

Keep a copy of your child’s IEP (Individual Education Program) and latest evaluation handy. Know what it says.
Before the annual ARD or IEP meeting, meet with the teacher and other key service providers to look at the current IEP and discuss how to change it for the next year.
Get to know IDEA and the IEP process. Check out the following websites: www.advocacyinc.org, www.thearcoftexas.org, www.nichcy.org, and www.wrightslaw.com.
Go into the IEP meeting with a clear idea of the issues and what outcomes you want from the meeting.
Take a picture of your child or have your child attend the meeting. Provide a written statement from your child of what he or she would like to say to teachers, or have him or her say it directly.

• Act carefully and thoughtfully when disagreements arise.

If you and school staff run into disagreements or hard feelings, take a deep breath and step back from the situation. Do not explode, but rather find someone outside of school to hear your story and sympathize with your emotions.
Write down what you are mad about, but also what you would like to see happen.
Find out what your school-system hierarchy is—who is the key person at each management level. Find out who allocates resources and can make a difference.
Now take action. Write letters and talk to the right people: start with the person closest to the problem, and then if you do not get help there, talk to the person next up the line.
Approach each meeting or phone conversation as a business meeting, with a business-like attitude.
First meet informally to resolve the problem, then have an ARD to write your new decisions into the IEP.
Ask for more testing to get a more accurate picture of your child’s needs and abilities.
Bring in tangible evidence about your child’s abilities and needs, such as videos of your child doing things he does not do at school or participating with friends outside of school; make a strong case for what you are asking for your child.
Think before meetings about areas where you are willing to compromise and where you cannot compromise.
Keep your poise and focus on issues, not personalities, facts not feelings. Do not look for revenge but try to solve problems. Keep the school team looking at long-term outcomes for your child: what’s really important for him or her to learn before graduating from school? What will make this child successful after graduation?
If all else fails, find out about mediation and due process.
Consult www.feta.com for many more advocacy and conflict resolution suggestions.

• Teach your child to participate also.

As your child gets older (around middle school), start to involve him or her in the IEP process as much as possible. Guide your child to be a “self-advocate,” able to describe his or her disability and the accommodations needed.
Encourage your child to make choices at first about little things, then about more important issues. Give your child opportunities to speak for him or herself in a variety of situations.
Work with the school team to coach your child to speak up in the ARD meeting, even to lead it as he or she gets older.
Begin to help your child to think about the future, what work to do, where to live, and how to find friends—the elements of a good transition plan for the future.
Good luck in the process of building a team with school staff and in building a positive, productive relationship with your child’s school.

When Working with your Insurance Company:
By Leah Rummel, Executive Director, Texas Association of Health Plans

I receive many calls from parents having problems navigating their insurance to obtain services for their children. I have found over the years that navigating the system has become more complicated due to the unending arrangements physicians and providers have with the insurance company. Most of these are not known by you, the parent, but affect how you can receive services.
My first advice to parents is:

• Ask for case management. If your insurance company has case management ask for it or insist to have those services. You life will be much easier if you only have to deal with one person at the company whose job is to navigate the system for you. Case managers have been known to find alternatives to services that may not be covered by the insurance, get approval for services that may be less expensive but more appropriate to your child, find other resources available in the community for your needs and suggest equipment, specialists or the latest technology available for your child that you may not know about.
• Read your policy. Never be without your policy. Your policy will tell you what is covered and how much your costs will be from the coverage. Most people who call me do not have their policy, do not know if they have a HMO or PPO, and do not know if their policy is a self-funded ERISA plan or a fully insured regulated plan. Ask your employer for a copy of the policy and find out if it is an HMO, PPO, Point of Service Plan or EPO. Find out if your plan is a self-funded plan regulated by the federal government or a fully funded plan overseen by laws in the State of Texas . The rights of members and the benefits are usually better in a fully funded plan.
• Know your rights. You always have the right to appeal a denial; you usually have a right to have an independent review for medical necessity cases and you have the right to sue your insurance company if they have incurred harm. You have the right to information concerning your policy, and the list of physicians and providers on the network. You have the right in most cases to never be charged more than the deductible or co-payment for services with in-network physicians or providers and you have the right for help from the Texas Department of Insurance. Their toll free number for assistance is 800-578-4677 (in Austin , call 463-6169).
• Do not be afraid to ask for services. Many people I talk with will not ask for services. I always recommend asking for what you want. The worst that a person can say is no. Also, when you get a no, do not be afraid to go to their supervisor, and then theirs, or to the Texas Department of Insurance. A large percentage of appeals for denied cases are overturned.
• If you have a choice of insurance companies, pick carefully . If your company has a choice of insurance companies to choose from, pick very carefully. You need to take into consideration which physicians your child uses regularly and if they are on the network, what services your child uses regularly and what level of reimbursement those are paid for by the insurance company, whether network restrictions can work for you and how much out of pocket can you afford. You can also ask other parents about their experiences with the insurance company or look at their complaint record at the Texas Department of Insurance.
  
  Remember to ask for help when you do not understand your policy.

In the beginning, (January 2003) things were very, very, very bad. In the end (May, 2003) things are not as bad as initially proposed, but much damage has been done, and it is probably not over yet. As the agencies scramble to implement measures passed during the session, all efforts may come to a screeching halt, as the Texas Comptroller did not certify the budget (H.B. 1). What this means is that the budget passed by the Legislature exceeds the amount of money the state will have to spend over the next two years. The Texas Constitution does not allow this. Therefore, the following information is based on what happened during the regular session and what we know today ( 6/19/03 ). If the Legislature is required to develop a new budget, some things will obviously change.

* * * * * * * * *

What happened during the session you ask? That is a very good question. Many of us are still trying to wade through the mountains of paper. While you might expect that we would know everything that was passed, it is difficult because of the crazy way things are done in the final days of the legislature. During that time, many bills that died in committee or never got a hearing on the House or Senate floor are amended onto bills that are moving quickly through the process. The result of this mayhem is that bills passed in the final days of the session often look very different than they did when presented in committee. Sometimes this works for us, sometimes this works against us. One thing is for certain, however, even though we lost some very important things and basically gained nothing, the damage would have been much worse without the efforts of parents, families, and consumers.
So, our congratulations to those of you who participated by making phone calls, sending emails, and visiting legislators. It was more important this session than ever before, and it will be even more important in the years to come. A trend has been established to reduce government and consequently reduce services to people who need them. Please do not think it will stop here. In the minds of many policymakers, this is just the beginning. Keep in mind, not a single new waiver slot was appropriated. In some waiver programs, attrition slots (those made available when someone leaves the waiver program) may not be made available and the total number served may actually be reduced. This is not the direction we want to go.
So it is time to sharpen your advocacy skills, stay informed, and be prepared when the call for help comes. It is only the voices of the masses that will make a difference in this environment. In the words of Barbara Jordon, “Government was never meant to be a spectator sport.”

Major Implications of House Bill 1 (Appropriations Bill) and House Bill 2292 (Health and Human Services Reorganization:

House Bill 1 is the Appropriations Bill that tells state agencies how much they can spend over the next two years and what they can spend those dollars on. House Bill 2292 is the legislation that will reorganize the state’s health and human services system. These two bills are closely tied as many of the projected cost savings in HB 2292 are assumed in HB 1. No part of the system was left untouched. While transition planning is underway, the process is expected to take 4-6 years. The Health and Human Services Commission (HHSC) will become a very large service provider under the direction of the Executive Commissioner. The current 11 separate health and human services agencies will be consolidated into four agencies and will be directed by four Commissioners. All rule making authority will rest with the Executive Commissioner of HHSC and will no longer rest with individual agency boards. The boards of each agency are eliminated and replaced with advisory councils that will have significantly less authority.
In addition to changing the structure of the health and human services system, H.B. 2292 contained many program changes to CHIP, Medicaid, Temporary Assistance to Needy Families (TANF), and various agency programs. Some of the major changes are outlined below.

Children’s Health Insurance Plan (CHIP)

• Eligibility remains at 200% of the federal poverty level.
• Assets test will be applied to those at 150-200% of federal poverty level.
• Continuous eligibility is now 6 months instead of 12 months.
• New provisions will require a 3-month waiting period for coverage to take effect
• Benefits will be reduced – speech therapy, occupational therapy, physical therapy, dental care, eyeglasses, home health, and mental health services are eliminated.
• Increased cost sharing will be required.
• Income disregards will be eliminated making fewer children eligible for coverage.
• Number of insured children will be reduced by approximately 122,000 clients in FY04 and 161,000 clients in FY05 due to the above policy changes

Medicaid

• Pregnant women over the age of 19 with income above 158% of the federal poverty level will not be eligible for Medicaid services, eliminating services for approximately 7,831 women per month in FY04 and 8,144 clients in FY05.
• Medically needy adults with income from 17-24% of the federal poverty level will no longer receive Medicaid services, eliminating services for approximately 8,472 individuals per month in FY04 and 9,959 clients per month in FY05.
• Medicaid provider rates will be reduced by 2.3-5% (depending on the type of provider) which will likely cause a reduction in the number of providers willing to accept Medicaid consumers.

Department of Human Services

• Personal attendant hours for long-term care services will be reduced by 15% for many community care recipients.
• Funding reductions in the In-Home and Family Support Program at DHS will cause elimination of services or reduction in services for more than 2,345 consumers.
• The rider allowing the funding to follow the individual out of nursing facilities remains intact providing opportunities for individuals to choose community services over nursing home care.

Texas Department of Mental Health/Mental Retardation

• Mental Retardation Community Services are reduced by 11% resulting in a reduction of the number of clients served by approximately 2,570 individuals.
• Mental Retardation In-Home and Family Support is reduced by 61% resulting in 2,587 fewer clients being served. Approximately 1,654 individuals will continue to receive services.
• Mental Health In-Home and Family Support program is totally eliminated resulting in approximately 2,946 individuals losing services.
• HHSC is required to perform a study on the feasibility of closure and consolidation of state hospitals and state schools.
• MHMR is required to study the conversion of 3-4 bed HCS group homes to 6-bed group homes.

Early Childhood Intervention (ECI)

• Although ECI funding avoided major reductions, the program will still undergo significant changes.
• Rules relating to cost sharing for ECI services have been proposed and some form of cost sharing will likely be initiated.
• Eligibility for ECI services is being tightened. A workgroup is currently working on recommendations.

Special Education Legislation
The environment in the Education Committees was also tough. More time was spent to ensure that bad things did not happen instead of working to pass new legislation.

• H.B. 1314 included language that was originally in H.B. 2707. This bill initially attempted to weaken the protections for kids around restraint and seclusion in public schools. Due to the efforts of parents who provided moving testimony, the author of the legislation willingly amended the legislation and current restraint and seclusion protections remain intact.
• H.B. 1339 affects the timeline that schools must follow to conduct a full individual evaluation of a student for special education services. The 60-day limit now begins on the date that the parent provides written consent for evaluation. Previously, verbal requests for evaluation began the time clock.
• H.B. 320 prohibits school employees from threatening to report parents for abuse in order to coerce them into giving their children psychotropic drugs or consenting to psychiatric or psychological testing or treatment of their child. In addition, when a district obtains consent to evaluate a child for special education services, upon the parents request they must provide the name and type of examination the district plans to use. They must also tell the parents how the results will be used to develop their child’s individual education plan.

This is probably enough to digest for now. As the budget re-development begins and the health and human services reorganization proceeds, and as opportunities for family/consumer input develop, I will pass that information on to you. If you, or someone you know, would like to be added to the email alert list, please let me know. If you have a parent group that is interested in learning more about legislative/policy advocacy, I would be happy to help with that too. It is important that more parent/family voices be heard. You can contact me at Colleen.Horton@mail.utexas.edu.
Have a great summer!

As educators improve partnership practices with parents, more schools and districts are adding the position of parent liaison. Although many have been funded with Title I monies, an increasing amount are hired for the specific purpose of working in the area of special education. So, how do you convince your child’s campus and/or district to bring a parent liaison on board?
First, get involved. Check with your child’s principal or with the district’s special education director to find out about the membership and activities of parent advisory committees (PAC). These might exist at district or campus levels to address issues pertinent to all education; and there may well be additional PACs that have been organized just to help guide special education services at the district or campus levels.
By becoming familiar with (and maybe serving on) these committees, you will be better able to identify the needs that a parent liaison could fill for students, schools and families, and will have the information to advocate for the funding of a paid position. Depending on the focus of the job, monies may be found in general education (including federal title programs) or special education budgets.
Many of the paid parent liaisons who are working in special education started out as active parent volunteers. They helped organize and maintain parent information and support groups. As more and more services were made available to and accessed by families, special education directors realized the value of creating a staff position to coordinate the development of proactive partnerships with parents.
Present yourself as a partner and problem solver. Work in collaboration with educators towards mutual solutions rather than as adversaries. Educators and parents alike have a common goal—to help kids be successful.

When you have a child who uses a wheelchair, getting them where they need to go is not always easy! However, finding the right type of van, a lift to fit your van and your needs, and a system to secure the wheelchair into the vehicle are easy when compared to locating assistance with funding for the purchase.
If you are one of the fortunate few who have a Medicaid wavier program such as CLASS, MDCP, or HCS/MRLA, you can obtain assistance with the expenses If not, you may have already called the local civic groups in your area (Elks, Jaycees, Lions Club, etc.) or every church in the phone book for help.
The June issue of Exceptional Parent magazine focuses on mobility. (If you do not get the magazine, you can go to their website for the article: http://www.eparent.com) The article that really caught my eye was “Financing Your Mobility Needs.” The American Association of People with Disabilities (AAPD) and Digital Federal Credit Union have collaborated to provide “a wide range of easily accessible financing opportunities” to assist with purchasing modified vehicles. You can become a member of AAPD for $8.00 and then become a member of the credit union by opening a checking/savings account with a minimum of $5.00. For more information, check out their website at www.aapd-dc.org or call (866) 241-3200.
To learn more about modified vehicles, both new and used, you can look under “Mobility Products” in the yellow pages or on the web or see the advertisements in Exceptional Parent. Alamo Mobility, Liberty Motor Company, and Ride-Away are a few companies that make these modifications in Texas.
Other important items

• Vehicle Manufacturers provide various rebates for modifications to their automobiles
• When purchasing a vehicle that will have accessible tags, you are not required to pay taxes on the purchase
• Start with the type of modifications you want and find the vehicle that will accommodate those modifications
• Talk to others that have vehicles like the one you are interested in if possible (TxP2P can help with that)
• Some places have modified vehicles for rent which provide you with the opportunity to try out various styles

I have had 3 vans for my daughter - a full size, a full size-extended roof, and a minivan. I love my minivan and am amazed that it actually has more head clearance for my daughter when getting her in than the other two. However, I hate the feeling of “bottoming-out” every time I hit a speed bump because the van has been lowered! As much as I love my van, everyday I see options that I wish were available when I purchased mine in 2000 - like rear entry lifts! Regardless, having a vehicle that allows you to travel with your family, even if it is to therapy, is awesome!
You are welcome to email me at Tammy-txp2p@sbcglobal.net or call me at (512) 458-8600 or (866) 896-6001 if you would like more information.

Laura ran her 4th Junior Dillo mile on Saturday morning, March 30, 2003 . She coaxed her cousins into running with her this year. She also called her Grandma Mable to come watch her at the finish line. Laura doesn't worry if she'll get tired. She knows she will. She knows all the kids will pass her in the first several seconds. With half the race to go, I watch her and think of the loneliness of the long distance runner. Most of the kids have already finished, and Laura has the track all to herself, no one to pace her. Later, I asked her what she thinks about during the race. She answered, "Just a little bit more." She's instructed her parents to stay on the sidelines. We try not to coach her during the race. She knows her body, and what she can do. She knows that a policeman will be trailing her on a motorcycle. It scared her that first year. I see her slow down, but she never stops. She hears a cheer from an onlooker, and her pace quickens; her smile widens. She knows she has people waiting for her. She knows she is not forgotten. As Laura approaches the finish line, the crowd cheers and chants her name. Her time is 22 minutes, 5 seconds--a minute, 36 seconds faster than last year's. Grandma Mable is confused about why the crowd is cheering and that they know Laura's name. She asks Laura if she won. Laura explains, "Everyone is a winner!"
Note: Laura, born prematurely at 27 weeks, has spastic dyplegia cerebral palsy. She is now 8 1/2 and enjoys running, swimming, and yoga.
NANCY CAN RUN, TOO!
I thought I would surprise Laura and myself by running in the Capitol 10K this year. It's been 17 years, and a little more than 17 pounds since the last time I had participated in the 6.2 mile run. I started training a couple of months ago, working my way up to running 5 miles a few times a week. I asked Laura for some running tips. She told me, "Don't stop. Don't ever give up." I thought about her words more than a few times during my early morning runs. They kept me going. I wondered if I had said those words to her.
It's not easy running with 14,000 other people. My starting place was in the back with the fun runners and the walkers. I told my mother, Mable, to walk outside her apartment today to see me run. She was on Enfield , just before the 3 mile mark. I called to her. She yelled back, " Nancy , (I) wait long time!" Jess and Laura were waiting for me at the 5 mile mark. Both Laura and I enjoyed that moment of role reversal. She was there for me, and I felt very special.
I was pleased with my 77 minute finish. I beat the guy dressed up like a cow, walking with the hula dancer.

Parkland Community Health Plan
Parkland Healthfirst
6300 Harry Hines, Suite 300, Dallas, TX 75235
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I have to admit, I was really looking forward to the first day of school this year! July and August were really rough months for me - trying to work, take care of my ailing 88 year old mother and a dying dog, not to mention leaving my 17-year-old son home alone –it all took it’s toll on me. School would at least take one worry off my list - until Jason looked at me in a panic that first morning and, with tears in his eyes, said, “I don’t want to take bowling!” Well, we all know bowling should be a goof-off sport for a teenager - but not for one with anxiety. Sensory Integration Dysfunction, and mild Cerebral Palsy. I took several big breathes and reassured him it would be fine - they would not bowl the first day. They’d probably just meet in the gym and talk about how to get across the street to the bowling alley. His Occupational Therapist had said she would go with him the first couple of days. By the time we got to school, he was still nervous but was able to get out of the car and into the high school. He’s taking all regular classes this year and he works very hard. Well, I was right about the first day - they did not go to bowling. However, my smugness didn’t last long - he very angrily informed me on the second day of school that you have to have SOCKS to bowl AND know what size shoe you wear AND tie shoe laces! How could I forget all of that!?!
I knew then I wanted to hear other people’s first day stories and get some ideas that may help with some of the transitions both our children and we face at school. Here is what I received:
* I'm sure that this is not unique to us, but this is probably one of the most valuable things we've done for Jake over the past several years. We did this when he transitioned from one campus to another for second grade, again when the attendance zones changed and his home campus was changed, and then this year when he was about to go from his elementary campus to his "new" middle school campus: we arrange a meeting and tour of the "new" campus with the principal, usually after school when things are quiet and pretty empty. We have also arranged opportunities during these times to meet his new teachers and explore classrooms and other facilities. When he transferred from Buda Elementary to Elm Grove Elementary at the end of 2nd grade, he was horribly anxious about the fire drill bells at the new campus. An email to his new principal resulted not only in a personal tour of the campus, but also a running of the fire drill bells so that Jake could get a feel for how loud they would be and what kind of sound it would make. His new principal allowed him to make an announcement over the PA to all staff on campus at that time that the bells were just a test. The fire drill was initiated by the principal by using a wall control panel and certain number codes. Thank goodness we had told her ahead of time about Jake's fascination with numbers and his incredible memory. She was able to shield her input of the numbers from Jake's view so that he would not be able to initiate a fire drill of his own! At the end of last school year, his new principal, his "old" counselor, Jake, and I toured his new middle school campus. He looked in many classrooms, visited with several people, and even met the campus police officer. His anxiety level diminished immediately, to one that is probably more fitting for any child about to go from elementary to middle school. After tours and visits like this, he was able to visualize what his "school life" would be like and was ready to get started! Jeanine Pinner
* When moving from elementary to middle school, I pulled David out of school during the day and went over to the middle school so he could experience the bell for class change and the throng of people in the hallway before he really had to. I did the same thing moving to high school - and a good thing, too. Instead of a nice bell, they have a claxon horn!! Rilla Chaka
* When it was time for Kaly to transition from elementary school to middle school, I spent an awful lot of time trying to prevent the whole “moving up” business and keep her where we were comfortable. However, it seems that all the time it takes to finally get comfortable dissipates and it is time to move on again. So, when it was time for high school, I was a mess. In her March ARD, we decided that Kaly could go to the High School (with one of the aids from her class) for 3 afternoons a week until the end of the year. This would allow her (and me) to get use to the idea of her new school with someone she (and I) were comfortable. Then when school was out that summer, Kaly would attend summer school there, which gave her the freedom to learn about the school without most of the students being in the way. By the time the first day of high school came around, Kaly and I were very comfortable with the whole situation. If I had known how wonderful high school would be I think we would have skipped middle school! Tammy Mann
* Let's start the last day of summer. Jordan woke up screaming, "My life is over" when he realized this was the last day of summer. It also turned out to be the day he picked up his first pair of glasses. Although we did do something fun that day, he wasn't thrilled about wearing the glasses to school. He said people would call him "four eyes.” After reassuring him that many people wear glasses like one of his best friends and both of his teachers (not to mention mom & dad), he reluctantly wore them. Jordan is ten years old entering fifth grade. On the first day of school, we pulled up to the curb for the drop-off. Jordan had his backpack stuffed with school supplies, with another huge bag to carry in. As he stepped out of the car, he bumped his head, something he had never done before, and then almost missed the step up the curb. He said, "I just can't wear these glasses!" Well I didn't blame him and wanted to say, "Just let me park the car and help you.” Instead, I took a breath and said, "Just wear them. You'll get used to them." To my amazement, he turned and walked into the school. Three weeks later, he's still wearing the glasses, and still going to school! Charee Vogel
* Christain started Middle School this year and, although she is adjusting, she still asks for her teacher of last year and she points "that way" to where her Elementary school is. She is doing quite well and she walks all by herself from the last 2 periods to the bus or to where I pick her up after school. However, I am not comfortable with Middle School because the teachers expect her to do everything for herself and that means going to the classes by herself. Being Middle School, I'm just afraid the students (some intentionally and some not) will trip her and she may get hurt. So far, she is doing very well and I am so proud of her. Feliciana Govea
* Chris and my school days are over since he is now 32, hard for me to believe. But every year at this time, I feel a bit melancholy and sad for he has flown from the nest, as has my daughter. All the stress of what the new teacher is like, how he'll adjust, will he be happy, and even if the bus can get him home to the right house is over and whereas it would be insane to say I miss it, it would be a lie to say I don't miss it a bit. My mornings and evenings are so quiet, too quiet. I miss having him around too since he's so happy in the group home. So, while it seems so hard for all of you, stop and think how quiet and sad it will be when it is all over. Enjoy your hurried breakfasts, tears of separation, lost lunches, ARD meetings, "he's not my friend" remarks, bus rides, stinky shoes and progress reports for they all do end and far sooner than you realize now. Ann Hardie
Thanks to all the moms who shared their stories. I hope we have given you some useful ideas to use for your child’s upcoming transitions. By the way, Jason has now figured out what a goof-off class is - he can get other kids to bowl for him and the coach doesn’t even notice!
One mom told me that the first day of school was great - she just didn’t send him to school but chose to home school instead. We have started a listserv for parents that have chosen to home school their children with special needs. If you would like to join this group to share ideas on home schooling, please email me at Laura-txp2p@sbcglobal.net

At some point, chances are you will be heading into an ARD meeting with the objective of altering and hopefully improving your child’s educational program. If you want to be as effective as possible, there are a couple of things you should be aware of and a couple of things you can do to increase the likelihood of having your requests honored and accurately recorded and made a part of the official ARD record.
But, before we get to what you need to do in an ARD, you need to be aware that most teachers, principals and other parents have never read the law and that you cannot count on them to know the letter of the law nor to give you an totally accurate interpretation of the law. Most people know what they know about the law through memos, workshops, and what someone told them. The chances are very high that you will, at some time, be told grossly inaccurate information that may or may not have been intended to circumvent the requirements of the law, but none the less, might severely alter the appropriateness of your child’s program. It is for this reason that you need to be well informed about the law, have access to all IEP data, and always ask to see written support of any district claims that limit access to services. The following can help insure your requests for services are not ignored or unjustly denied:

• Do your best to stay informed about the law by becoming very familiar with www.wrightslaw.com or obtain (and read) a copy of From Emotions to Advocacy by Pete and Pam Wright. This book can be ordered from their website or any book store.
• Come to the ARD prepared: Have a list of the things you expect to discuss and services you are seeking. Review IEP data prior to the ARD so you can measure progress.
• If you make a request in the ARD, be sure it is reflected in the minutes in the specific terms you stated: “Parent requested that speech be provided as one-on-one direct services instead of consultation because there has been no progress in the use of the communication device” Vs “parent asked about speech”.
• Make sure the minutes then reflect one of 3 definitive answers: AGREEMENT to provide the service sought including the agreed frequency, duration and start date, REFUSAL and the district’s specific reason for refusal, or AGREEMENT TO ASSESS for educational need. (Remember, the IEP should be derived from accurate assessment.)
• If the school refuses and they state the law or district policy as the reason they are refusing your request, ask to see the section of the law or the policy and procedures, or the criteria for their determination. Many schools have matrices they use to determine how much of a service a child gets – ask to see whatever it is they are basing their position upon. Do not move forward until they provide it to you.
• If the school tries to avoid giving a clear yes or no (a common tactic that allows the issue to never get recorded), do not move on until you have a clear position from them. If they are hemming and hawing over it, then politely state, “well, it sounds like my son will not be getting one on one services and you are refusing my request. I need to make sure you write that in the minutes.” Do not move forward until it has been written and read back to you and you agree the statement accurately reflects what was discussed. If they refuse to write it in the minutes, remind them that the minutes are supposed to be an accurate reflection of the discussion. Do not hesitate to end a meeting if they continue to refuse to accurately record the request and the school’s response.
• At the end of the meeting, do not sign anything unless you are firmly believe that you child will be getting an appropriate education. Otherwise, take the papers home and re-read them. Attach an addendum to correct ANY statements you disagree with keeping in mind that letting seemingly small inaccuracies to remain as written may come back to haunt you later.
• If at the end of the meeting you did not get something that you believe is required for a Fair and Appropriate Public Education (FAPE) to be conveyed to your child, SIGN DISAGREE. Do not sign agree then complain to someone that you could not get a one on one for your child. Be aware that when you sign AGREE to the IEP you are saying you agree with EVERYTHING written in the IEP including the type and level of services that are different from what you requested

Ican’t believe it has been a year since we received the Lowe Syndrome (LS) dia