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Summer 2001 Table of Contents
Versión Español de este artículo (Spanish Version)
By Edgenie Bellah, BVICP Consultant, Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) and Kate Moss, Family Specialist, TSBVI, Texas Deafblind Outreach
One of the simple truths in life is that parents are their children's first teachers and advocates. Parents of children with visual impairment, deafness, and deafblindness face unique challenges with these dual roles. To work confidently alongside their child's professional team members, whose expertise comes from years of education and ongoing training, parents need training opportunities themselves. They need opportunities to expand their own knowledge base about their child's medical and physical needs, special education law, transition, resources, communication, orientation and mobility, and much, much more.
We are fortunate in Texas to have many such training opportunities for parents. Some come from within the school system, local Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) offices, and Regional Education Service Centers. Others are offered on a statewide basis by TSBVI Outreach, DBMAT, and others, such as Texas Focus, the Texas Symposium on Deafblindness, DBMAT Family Conference, and the Technology Institute. Available training is sometimes specific, focusing on visual impairment or deafblindness. At other times it may address more generic issues such as special education laws, transition issues, and estate planning. Many parents will have opportunities to learn about the syndrome or medical condition that caused their child's disabilities through state and national conferences such as the CHARGE Syndrome Conference, the Texas Usher Syndrome Family Retreat, the Shaken Baby Syndrome workshops, and other similar events.
There are so many available training opportunities that it is often hard for parents to choose among them each year. Unfortunately, many times the deciding factor has to do with whether or not they have the resources to pay for registration, travel, and child care expenses associated with the events. The majority of parents must depend totally on scholarships or training funds. In recent years funding for these activities has decreased and the number of people wanting to access training funds has increased. Event planners struggle to make sure all that the families who want to participate have the support they need to attend. Still, many times parents can't find the resources they need when they need them.
Event organizers need to get the word out on training opportunities well in advance of the event. By sharing training event announcements with the ESCs, TSBVI, and TCB so they can be included in their training calendars and on their websites, parents know where to go to find out about training opportunities. This also helps families plan ahead about when and where to get funding. The TSBVI website maintains a statewide calendar of training opportunities for both families and professionals. We welcome any submissions to this calendar. To share your workshop announcements, contact Jim Durkel at (512) 206-9270, or through e-mail at email@example.com. This information is also published in the classified section of the SEE/HEAR newsletter.
Learn about possible resources to help you offer travel and registration funding to families, and contact them in the initial stages of planning. The Texas Planning Council for Developmental Disabilities allows event organizers to write a request proposal for funding to help families attend training. Local Lions Clubs and other civic organizations often have funds they are willing to contribute to cover these types of costs. Some school districts and Education Service Centers may have limited dollars to help sponsor families, if they are notified of the event early enough.
Collaborate with local, regional, and state agencies and organizations to provide the support families need to participate in training. This might mean asking a local scout troop to help provide child care at the event, or seeing if a local grocery or restaurant will donate food. The agencies may not be able to pay for family travel, but might agree to share the cost of a speaker or other expense. The more contributors there are to an event for various individual costs, the more funding may be directed to help with travel and childcare needs.
Too often parents don't ask for help until it is too late to access available training funds. Training events typically have set budgets for assisting families with travel and registration costs. Decisions about who will receive available funds are often made shortly after the registration deadline. Parents who do not get their registration forms in ahead of deadlines often miss out.
Agencies such as Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) have state paperwork requirements that make last minute requests problematic. All TCB services, including training for parents, has to be part of plan that is developed with the family. Sometimes funds requested at the last minute can only be provided on a reimbursement basis. This means that parents will not be able to attend if they can't afford the upfront costs or wait a month for the processing of reimbursement checks.
Sometimes parents are hesitant about signing up for a workshop until the last minute because they are unsure of their ability to attend due to a child's health, family work schedule, or other life event. Most conference planners can cancel a hotel reservation, airline tickets, and so forth at the last minute, but it is often very difficult to make these arrangements even a week before the event. Most hotels have special rates for reservations made during a set period of time. Airline tickets purchased very early tend to be cheaper than those purchased at the last minute. If parents think there is any chance they can attend a workshop, it is better to get the registration in on time and make travel plans early. Of course, parents should check with individual funding sources and conference or workshop planners to find out about cancellation policies.
Parents and other interested family members should check these resources regularly to learn about training opportunities that are being planned. Make a list of any training events that seem useful, and contact the organizers to get registration information. Ask them about funding to assist with event costs and learn how these funds can be accessed. Prioritize the events based on training needs and your schedule. If you can select only one or two events each year, be sure it will meet your training needs and be held at a time and place you can access.
Contact funding resources well in advance of the event to let them know about your interest in attending. Find out if they anticipate having funds available. For example, TSBVI Outreach typically has a travel budget for each of its sponsored events. Outreach policy is to spread the funding out as far as it will go. Knowing how many families need to access these funds makes it easier to plan distribution.
Think about the type of support you will need and be familiar with the approximate costs of these supports. This may mean prioritizing costs. What parts could you pay for if no other source was available? What items are less likely to find a different funding source? Not everyone can pay for airline tickets, but many people are able to pay for gas charges or meals. How much will the hotel room cost? Is the whole family flying to the event, or, if you must drive a long way, will you need an extra night of hotel costs? The clearer you can be about your exact needs, the easier it is for funding resources to identify how they can help.
Become familiar with local funding resources and other supports. Your local Lions Clubs, Soroptimist Clubs, Elks Clubs and other civic organizations may have money to help cover some of the cost of travel and registration. If you are receiving services from MHMR or through Texas Department of Health or Texas Department of Human Services, they may be able to assist with respite care, child care, or other costs associated with attending training. Generally your TCB caseworker can help you identify local and regional resources. Of course, both TCB and TSBVI Outreach are resources for families. Make a list of all the possible resources in your area so you know whom to call when you need help. This is something you can also share with other parents who may not know where to go for help.
Get creative! If you have friends or family members who might be able to help with some part of the expense, offer to trade favors. For example, baby sit their children in exchange for their baby sitting services while you are at the training. Help them with some needed task in exchange for gas money. Set aside a few dollars each month to use for incidental expenses at these events. Remember the pocket change jar your parents might have kept? Even if you only have ten dollars set aside when you want to go to training that can help pay for a meal or buy some gas. One family cleaned out their garage and had a garage sale to get money together to help with travel to a national conference.
Check out training opportunities that don't require travel expenses. For example, is your local school district offering training? More training opportunities are now being offered through distance learning methods such as Internet courses, correspondence courses, videotapes, etc. Sometimes just meeting with another parent to talk about issues and share ideas can be an incredibly beneficial training experience. Think about organizing a small "coffee klatch" of parents or plan a family picnic in the neighborhood park with several other families. Not all training has to involve going to a workshop or conference.
Look to your local school district for providing individualized training related to the implementation of your child's IEP. When you are having your child's ARD, talk about your training needs and the training needs of staff working with your child. Parent training is a related service as defined by IDEA. Some of your training needs may be met by school staff working with you at your school or in your home. In some cases, if they are asked, your Regional ESC or TSBVI Outreach may be able to bring training to your school program or at least to your community.
Don't forget that you may be able to provide training as well as receive it. This can be a help to members of your child's team who need to learn about the ways you have been successful in working with your child. Consider what you can offer to your team, to help them learn about the special ways you feed your child, how you communicate, what you do to comfort him when he is frightened or cranky. After all, you are an expert about your child.
The most important element is to get training needs spelled out in the IEP and discuss the resources for meeting these training needs as a regular part of your ARD meeting. Schools can then plan ahead and budget if they are trying to help pay for part of your training costs.
Parent and family training is an important part of helping a child with visual impairments and deafblindness. Unfortunately, not every parent who wants to access training will be able to do so. It is important to plan ahead and be familiar with the resources that are available to help in this effort. Please think about your family's training needs and start planning today for the 2001-2002 school year.
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Last Revision: September 2, 2003