Next step...there is always a next step. No matter who you are or where you live, your thoughts need to go to the next level of progress for your child. I think it was easier when they were little because there was the IEP regime. You knew what to expect and you knew what worked. You could figure out how to get the services your child needed by simply looking at the plan in front of you. But that all changes when the "yellow bus stops coming to your front door." And no, transition is not always played out before you. Technically districts are supposed to help with transition but that is not necessarily the case. In fact, from what I can tell, transition into adult services generally stinks countrywide. So here are some actions you need to take:
1. Make sure you keep all medical records. You will need to begin the process for adult social security disability benefits before your child turns 18. Despite what the news media is telling you, it is not easy to receive theses benefits. Try to give yourself enough time so that there isn't a huge gap between the end of childhood payments and the start of adult payments.
2. The same goes for Medicaid for your child. Yes, you could try to get into the Obamacare system, but that may actually be too expensive. If your child is an adult, and unemployed, they are entitled to Medicaid. (Also make sure that the Medicaid offered actually fits your child's needs.) Of course, check out all the plans and see which is best for your child. Also children are now allowed on the parents health insurance until they are 26. This is also helpful and probably the least expensive alternative. However, check out the laws in your state. See if you can switch back and forth between plans. Can your child rejoin your health insurance if the alternatives don't work out well? Check Here
3. Are there state programs for your adult child? What kind of work skills/training program exist if at all? Are their non governmental agencies that can help? What are the difference in residential and day programs? Find the government agencies that should be able to help you or point you in the right direction. This varies from state to state.
4. Is there adult state housing for them? Are they already in the system as a child? How hard is it to get into the system? What is the wait list time for housing? Is the housing system safe? (You may find that if your child was not in residential placement during k-12 then it is nearly impossible to get them into adult housing because the list is so long. In fact, in my area, if your child isn't in a residential placement by the time they are in middle school, it becomes harder and harder to place them.)
5. Go to an estate planning lawyer and make sure that all the necessary paperwork is in place. When your child turns 18, they are officially adults. You do NOT have any say over their medical care without their permission. This is moot, of course, if you need to have your child declared incompetent and under guardianship, which is an entirely different set of legal issues. But for the majority of our children these papers are very important. You will need a health care proxy statement, and a power of attorney for your child.
6. If you were able to establish a special needs trust for your child make sure that it is in tact and properly created so your child can receive adult services. New laws and regulations are created yearly. Make certain your lawyer keeps on top of them.
7. If you have a child that goes to college make certain that they sign the FERPA statement allowing the school to talk to you. (Each school has their own version) If your child has problems at school and nothing has been signed the school does not have to inform you about anything concerning your child, including hospitalization and psychiatric treatment, never mind letting you know if they are failing. Meanwhile, you will still get the bill whether the FERPA is singed or not.
8. If your child goes onto post-secondary school, find out what accommodations are allowed at that school. While many colleges, and universities are allowing a variety of supports, many are not. Remember too that these supports are simply basic accommodations unless you pay for a specific autism related or LD related program. Supports do not include paras, or transportation or even in many cases assistive technology. (When the boys first started at their college there wasn't even a note takers program.) This is all up to the family now. (Yes I know, if you thought it was expensive before, it can become ridiculous now...sorry.) The IDEA does not apply to post-secondary education, only the ADA.
9. JOB COACHING is an essential element of post k-12 education. In fact some of it should have been done during those years when social skills were being taught. (Talk to your school and social skills programs to find the best way to accomplish this goal.) Unfortunately they usually are not. There is a big difference between social skills for school and social skills for jobs/interviewing. While many schools do have interview skills seminars (college and high school), this may not be enough for your child. Check out the program and add what you deem necessary. Check with your local businesses, many times they would be happy to have an intern with a job coach. Since internships are the way to go now, it would not be an unusual step for our children.
10. Do not think that your child cannot go to college or to a technical school. In fact many community colleges have terrific training programs for all levels of student and in a variety of professions. Check out what schools near you provide the best programs.
11. PS. Depending upon your child and their co-morbid issues (if they have any in fact), there is no reason your child could not go away to post-secondary education if they want to. But that is your call as their parent to figure out how best to accomplish this goal and to accommodate them as well.
As with everything that happens with our children, there is the basic plan and there is the revamped plan. While it is not possible to stay on top of every aspect of our children's future, it is up to us to try to figure out the best way to help them enter their young adult years.
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NOTE: This post is simply my own experience and what I found to be the important issues we faced once the boys aged out of K-12. This is merely a place to start. It is very important that you consult a respected estate and special needs attorney for all legal questions and problems.