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Advocacy: How to Speak for Those Who Cannot

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Advocacy: How to Speak for Those Who Cannot ADVOCACY: HOW TO SPEAK FOR THOSE WHO CANNOT Advocacy equals action that results in change. It is not always enough that we have found the best local program, housing, vocational services, or school for our child. Situations sometimes arise that call for action. It could be said that advocacy is the art of being part diplomat and part detective. It requires the development of skills we all possess and a willingness to remain levelheaded in the face of bureaucratic runaround and rigid guidelines. It is easy to become confused and mistake complaining for advocacy. The difference lies in the process. Advocacy is composed of (6) steps: 1. Identifying and defining problems; 2. Brainstorming (creative problem solving involving two or more people); 3. Evaluating and choosing alternatives; 4. Communicating intentions; 5. Taking action; and 6. Assessing the outcome of the action. Any problem that cannot be solved by the simple communication of stating your or your child’s preferences may become an advocacy issue. As an example, let us imagine that once a week your child starts acting out, is uncooperative, aggressive, perhaps cries, and refuses to eat. You notice the pattern almost at once and call the school to see if they have noticed the change. You learn that on the same day you see this behavior, the children have swimming class as part of physical education. You had neglected to tell the school of the fear your child has about pools. Now that they know he is afraid, the school schedules a different activity for your child during physical education. The problem is solved. This is not true advocacy. If the school had insisted that your child, “get used to the pool and overcome his/her fear”, and you felt this was ethically inappropriate, you would have an advocacy situation on your hands. Advocacy exists when resistance to change appears. To understand advocacy, we must define the six- (6) steps mentioned above. Defining the problem: In our example above, the initial problem may seem to be the child’s behavior or their fear of swimming. This is only true if the school discontinues putting the child in swim class. If the school insists on continuing to put the child in swimming, the problem stops being the child’s issues and becomes the “system’s” problem. So, in our example the problem can be defined as: School program does not allow flexibility for personal preference. Brainstorming: This process means contacting people directly and indirectly involved with the problem and having them all come up with solutions to the problem. In this case, our group might include parents of children in the school, family members, and a teacher who sympathizes with our difficulty and a social worker from the school department. If these people can be brought together 40 for a meeting, you will see the rapid development of a pool of ideas. If you must, contact each one individually, review the other’s ideas and generate more. The process will be slower but just as effective as a meeting. Let us say the following list of ideas is generated: 1. Remove the child from the school. 2. Let the situation remain the same (maybe the child will adjust). 3. Offer school alternatives for activities during swim time. 4. Threaten the school with legal action. 5. Begin a desensitization program to help the child overcome her/his fear of pools. 6. Keep the child home on swim days. 7. Have a parent attend swim class with the child. 8. Implement a comprehensive behavior program utilizing imagery and reinforcers for attending swim class. Evaluating and choosing alternatives: Some choices may be too radical to consider, while others may not be cost effective. The ideal is to find solutions that will address the issue and can be effectively implemented. In our example, both teachers and family could assist if solutions 5, 7 and 8 were used. These solutions would lead to maximum involvement and have the potential to address the child’s fear and the larger issue of school cooperation. Communicating intentions; This can be as simple as a phone call to all parties involved or as complex as a written proposal to the same. You will need to meet with the highest level necessary to implement your plan. In other words, if the State Committee on Human Rights must authorize the program, it will be important to invite the Director of Special Education and the principal of the school. If your plan can be implemented with the authorization of only those directly involved, then those are the individuals that need to be present. Putting your message across in a calm, rational way may be the most significant part of your presentation. Loud voices and anger will sabotage the best- laid plans. Taking action: Once everyone understands his or her roles in the plan, the process of implementation can begin. Some of the design work developed in stages 2 through 4 may need re- working. Changes are acceptable as long as the goal does not become lost in the process. Assessing the outcome: Periodic review of the plan and progress is a necessary part of this process. If the plan has achieved its goal then the program can be partially or fully dissolved. The child will be the most significant indicator in this process. The example we chose was relatively simple compared to some you may encounter. Most schools attempt to be sensitive to your concerns and opening the lines of communication will, usually, achieve satisfaction. It is most often state or federal agencies that present the most rigid guidelines and may force advocacy to the level of the courtroom or an arbitration setting. If you truly think your child is receiving inappropriate services and his/her needs continue to not be addressed, you may need to take action. Individuals with disabilities often find it difficult to speak for themselves and you may need to be their “voice” to ensure their desires are heard. 41 RESPITE CARE FOR THE TIMES WHEN YOU NEED TO GET AWAY The Groden Center provides respite by trained professionals for qualified families of their students in order that the families may have relief from providing constant care. Some Basics The RI Department of Developmental Disabilities and The Department of Human Services contract with the agency Training Thru Placement (TTP) to provide respite services to some of the families of individuals with developmental and behavioral disorders in the state. Because of its experience and expertise in servicing individuals with autism, the Groden Center is sub-contracted by TTP to serve as the respite care coordinator for individuals with autism and/or behavioral disorders in Rhode Island. Respite care provides parents with the opportunity to meet planned and emergency situations or to take a well-deserved break. It may also prevent stressful situations from becoming crises. The services are typically provided on a temporary, as needed basis, however respite may also be part of a regular schedule of care. Respite care services can be arranged in or away from the family’s home. The length of care can be several hours, overnight or even longer. Families with Title XIX waiver status are allocated ninety (90) hours of respite service for each six- (6) month period. Because of a limited number of providers, however, services for a particular day or time (example: vacation week) are usually available on a first come, first serve basis. Who Are the Providers Respite care providers are carefully trained and screened before providing services. Groden Center Staff must have worked at the school a minimum of three (3) months and all staff must have completed respite care training. Documentation of the provider’s familiarity with the client and/or relevant behavioral techniques is made before assigning a provider to a client. Parents may also refer friends, other relatives, or neighbors to the Groden Center so that they may become Respite Providers. How It Works Respite services are currently available to individuals who have received a Medicaid Title 19 Waiver Authorization through their social worker at the Department of Developmental Disabilities. Currently DHS is not accepting referrals for a wait list, and no new authorizations have been granted. However, families needing respite are encouraged to contact DHS. Unfortunately the waiting list for waiver status is long. The process can be difficult but worth the effort. You will need to disclose personal information as well as wait a long time for the authorization to be granted. 42 Nonwaiver Help Occasionally, the state will make Emergency Funds for respite services available. This is typically referred to as “non-waiver respite”. You should contact the Department of Human Services to inquire about this option. In addition, your local CASSP may be able to allocate limited, short-term respite funding. If an emergency arises, The Groden Center has a special fund to pay for limited respite services as well. Once you have secured a funding source, contact the Respite Supervisor at the Groden Center to arrange for services. Your school will have information and emergency release forms which you will need to fill out. You will not be able to receive respite services until these forms are on file. Please do not overlook respite! It could give both you and your child the break you need. 43 FINANCIAL ASSISTANCE HOW TO APPLY FOR SSI AND MEDICAL ASSISTANCE Although it may seem as though you are on your own at times, there are programs designed to provide children and adults with financial assistance and services. Certain criteria, listed below must be met in order to be eligible for these services.
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