2. Advocacy Define advocacy as you understand it. ____________________________________________________________________ In what areas have you had to advocate for your self or your child?____________________________________________________________________ Are you comfortable advocating for yourself or your child? ____________________________________________________________________ How can we help? ____________________________________________________________________ ____________________________________________________________________ Please give us contact info if you are in need of assistance…__________________________________________________________ ____________________________________________________________________

3. Know the Language: Repeat Acronyms will now be a huge part of your everyday life weather you are talking to Dr.s, educators or agencies. If this is not possible, NEVER, feel like you can’t ask for an explanation. Its better to learn something new then to leave still in the dark. Be brave this is a new adventure and the odds are you will have to fight for everything.

4. Evaluation When: I cant say this often enough “as a parent you will most likely be the first one to notice if your child is not meeting expected milestones”. At this time if you haven’t begun taking notes and keeping a journal START NOW. Who: your Dr., ISD, agencies. HOW: At this age the ISD will most likely be the agency but if they are not finding what you expect you can always go else where (MHMR, Private Dr.s etc.) But be aware the ISD does not have to accept alternate diagnosis. Why: If you don’t, no one else will… you may think you don’t need to reach out to the agencies, but you will find your cash will run out quickly and insurance can’t cover your needs– or, if they do, you’ll meet your maximum limit sooner than you think.

5. What: answers you need to have…use this as a check list for understanding the process you are beginning. http://nichcy.org/schoolage/evaluation#review 1.Purposes of evaluation Why do we need this?Purposes of evaluation 2.IDEA’s definition of “child with a disability” What does it mean to be identified?IDEA’s definition of “child with a disability” 3.Identifying children for evaluation How was my child identified?Identifying children for evaluation 4.Giving parents notice What is the rule?Giving parents notice 5.Parental consent Do you have to allow it?Parental consent 6.Timeframe for initial evaluation Once a need is identified how long will it take?Timeframe for initial evaluation 7.Scope of evaluation What are they evaluating?Scope of evaluation 8.Review of existing data What is the existing data being reviewed?Review of existing data 9.Variety of approaches and sources What options have been tried?Variety of approaches and sources 10.Consider language, communication mode, and culture Was everything considered?Consider language, communication mode, and culture 11.Determining eligibility Based on the scores what services are appropriateDetermining eligibility 12.Disagreeing with evaluation results What are my rights if I disagree?Disagreeing with evaluation results 13.What happens down the road? What is the plan and who is involved?What happens down the road?

6. Education Who: Your local school district through 504, Special Ed. Which can be with modification and accomidations, special learning settings( resource), self contained settings(life skills, functional, behavior classes) or inclusive settings. What: At this time the biggest concern I find parent have is the setting. So be sure you have an idea what your school offers and how they would apply to your child. How: If you are just now identifying a disability you will most likely go through the RTI process which should lead to the observation/evaluation process. When: After the RTI process meetings should occur that identify the best services and setting available for your child individualized educational needs. LRE should be part of the discussion. Why: The RTI process is a built in plan to insure that a child is not but into special education unless it is the only option, it requires that natural teaching techniques such as tiered teaching are being used before labeling a child for life.

7. Insurance and Health Care What: Start with your private insurance but it is never to early to look into alternate plans. How: Contact you're local SS office, MHMR, and HHCS, options include CHIPS, MEDICAID, SSDI.. When: Now Don’t wait till your private insurance runs out or you are in an emergency situation. The application process is long and very involved with many part and partners who will need to complete their part before approval can be given. Why: If you have private insurance there will many things not covered and it will run out before you realize. Don’t wait… If you don’t have private coverage you’ll need all the assistance you can get and again getting it is a long process. Who: Local SS office, MHMR service center and HHSC office.

8. Employment You may think at this age ??? Why does this matter to me?…” At this point its not the child's employment but yours that will be greatly effected Do your home work. you need to know your rights. What : Does Family Medical Leave apply? What happens when you have to take off work for Dr. appointments? When: the sooner the better, communicate with your employer. The better prepared they are they more likely they will be to work with you. Keeping in mind you don’t have to disclose anything you don’t want to. Where: can you this information? Your HR department should help you but if you don’t think your getting the best info you can find specifics on this webpage. http://www.dol.gov/whd/regs/compliance/whdfs28f.pdf

9. Community Who : Agencies, community groups, play groups. Its never to early or to late to look for connections, use your local ISD regional offices, non profit groups and networking groups. Why : Knowledge will allow the ability to be the best advocate possible. When your involved with a net work you don’t have to know it all you have a team. What : activities, socialization, partnering, networking, support friends and a team when and if it is needed. Where : Use the internet find these opportunity. When : Its never to early or to late.

10. References and L Links/ references Insura nce Insurance and Health Care Evaluation Education Employment Community Who What Why How Advocacy At this point, I could give you a list of references that would go on and on but I would prefer to connect to the network and just a few direct websites. Please remember HOTAN is here to help. Whether it is policy, advocacy, training, or just someone to talk with. The Network is a great place to turn. http://www.hotautismnetwork.org/ http://texasprojectfirst.org/ECI.html http://www.dshs.state.tx.us/cshcn/ http://www.ssa.gov/pubs/EN-05- 10026.pdf http://www.familiesusa.org/issues/medic aid/making-it-work-for- consumers/covering-services- children.html http://nichcy.org/schoolage/evaluation