A very good article was written in NY Metro Parents October 2010 issue. It was:
A Guide to Planning Ahead for Your Child with Special Needs: Services and Care Options After High School and Beyond by Amber Greviskes
I made a contribution to this very well written article. However, because much of what I wrote was condensed, I have decided to post the information I contributed to the article in it's entirety. It's more than a small moment to learn from but will provide a wealth of information for you and your child's future.
This information is meant to help parents know the steps to take in planning for their special needs child's future. It is a wake-up call. So here it is.
Marisa was diagnosed at 18 months. I vowed from that moment on to do everything I could to ensure that she lead a happy, fulfilling life, long after I am gone.
Time goes by very quickly. I remember many years ago when Marisa was just a toddler, I was watching a video conference by Temple Grandin, the internationally well known person who is classified on the spectrum as Aspergers. She said that parents need to make plans very early. They need to think way ahead because before you know it, the future is here. Think of what your child's strengths are and focus on those.
When Marisa was 4 years old, I took her to a pediatric neurologist who was very knowledgeable in the subject of autism. She gave me some advice that was extremely helpful and has made a tremendous difference in the way Marisa has turned out. She said, "No matter how intelligent your daughter may be, the single most important thing you can do is get her behaviors under control, because that will greatly improve her prognosis." From that moment on, I was determined to set up a working behavior plan that Marisa continues to use today to self-monitor her behaviors. The trick is to pick goals that are achievable,
and offer rewards chosen by the individual. Goals change over time, but the concept remains the same. Marisa earns a certain number of points toward a goal of her choosing. It usually takes her about a month to earn her reward. Of course for a younger child the number of stars or points could be less, because young children may not be able to wait as long for a reward. The idea is to be flexible, and mold the behavior plan to the individual child. A parent once said to me that she thought I was spoiling Marisa by rewarding her with gifts she chose. I said, "Don't we all get rewarded by doing jobs well? Nobody does something for nothing. Most of us get paid for work. That's an incentive and reward after all."
A behavior specialist once asked me, "What are your goals for Marisa's future as an adult?" I thought about it and replied that she would probably live in a group home or a supported apartment because her judgement was poor, but hopefully she would be able to have some kind of job that she would enjoy.
Then he said, "So strive to help Marisa become as independent as she can, so she will be able to get into the best supported living arrangement possible." I always considered this excellent advice. It has motivated me to keep working on Marisa's ADL (activities of daily living) skills.
It's also important for parents to face up to the fact that they will have to plan, and plan early. While our kids are in school, parents would like to believe all is taken care of. Many parents struggle to get services in regular public school programs. Some have their kids go out of district to special schools. Parents are happy when they get the services they want for their child. Some of these kids will be able to graduate from regular schools with regular diplomas and then go on to college. However, it may be a struggle, because in many cases, social skills have been neglected. The result is that many of these kids will have a hard time navigating the college experience on their own.
Others that are not as academically able, will be able to stay in school till they are 21, because by law they are entitled to a free, public education up till that age. However, upon graduating, all services end. Then parents are faced with a rude awakening. Transition planning is supposed to start at age 14, and it is important that parents insist on this from their school districts. Many parents don't want to think about this, so they put off planning till the last year. This is way to late. And what is transition planning supposed to mean? Many parents don't understand that either. There are a number of things that parents need to do:
Before age 18 they need to legally become their child's guardian because once kids turn 18, they can no longer make decisions for their child without legal guardianship. Health insurance companies won't even talk to you, and if your child can't handle their own medical decisions this could be a major problem.
Most important is establishing eligibility from OPWDD (Office for People With Developmental Disabilities). This requires sending psychological test scores to the OPWDD doctor who reviews the child's scores. Eligibility for services requires IQ be below a certain number. If the score is too high, it's important to have a Vineland Second Edition test done. The Vineland tests adaptive living skill level and establishes if the child actually would need assistance in living, even though they may be very capable academically. Parents need to insist on having the required tests for eligibility of OPWDD services done while their child is still in school. This is part of the schools responsibility and should be considered part of the transition planning. Once the child graduates, any testing becomes the responsibility of the parent.
Also parents should apply for SSI (Supplemental Security Income) when their child turns 18. Actually, they are able to apply before 18, but social security decisions are based on family income before age 18.
After age 18, the parents income is no longer included in the decision, and since the disabled child is entitled to receive SSI, it's a good idea to apply as soon as they are 18 years of age. Also, once SSI is received, Medicaid automatically kicks in. Medicaid is important, not so much for the medical insurance, but for the services that are granted through Medicaid. Parents need Medicaid benefits to receive services from OPWDD. These services include Service Coordination which is important to have in order to navigate programs once the child has aged out of school. Of course, to receive services from OPWDD, one needs to have established eligibility, as I mentioned in the above paragraph.
There are so many resources available to parents today. The Internet makes it easy to find many of these wonderful resources. On Long Island we have AHA which is The Asperger Syndrome and High Functioning Autism Association. They have expanded and grown and have a wonderful on-line newsletter at www.ahany.org. There's also the Cody Center at Stony Brook University in Suffolk County and The Fay J. Lindner Center for Autism n Nassau County. In New York City there is an agency called JOBPATH that helps graduates with disabilities find jobs and helps them have smooth transitions in to the working world. In New York State there are numerous other organizations and agencies to call on for help:
Parent to Parent of NYS at www.parenttoparentnys.org
The Jewish Child Care Association at www.jccany.org
The Long Island Advocacy Center at www.theLIAC.org
There are numerous Jewish Community Centers throughout Long Island and the entire Metropolitan area. The Sid Jacobson JCC, The Plainview JCC and most recently The Oceanside JCC have programs to help children with special needs on Long Island.
The bottom line in tips for parents?
Plan, plan, plan and do it early. It will make your life less stressful and easier when your child is grown and ready to go out into the world. Don't put anything off till later, and face the fact that there's a disability to deal with. If your child grows up and grows out of the problem, that's great, but most don't grow out of the problem. Autism is a life long disability. Learn to accept, embrace and work with it. Don't turn a blind eye expecting the schools to do all the work. You have to do your part. You'll reap the benefits later if you do, and your child will be there to thank you in their hearts if not in their words.
A Guide to Planning Ahead for Your Child with Special Needs: Services and Care Options After High School and Beyond by Amber Greviskes
I made a contribution to this very well written article. However, because much of what I wrote was condensed, I have decided to post the information I contributed to the article in it's entirety. It's more than a small moment to learn from but will provide a wealth of information for you and your child's future.
This information is meant to help parents know the steps to take in planning for their special needs child's future. It is a wake-up call. So here it is.
Marisa was diagnosed at 18 months. I vowed from that moment on to do everything I could to ensure that she lead a happy, fulfilling life, long after I am gone.
Time goes by very quickly. I remember many years ago when Marisa was just a toddler, I was watching a video conference by Temple Grandin, the internationally well known person who is classified on the spectrum as Aspergers. She said that parents need to make plans very early. They need to think way ahead because before you know it, the future is here. Think of what your child's strengths are and focus on those.
When Marisa was 4 years old, I took her to a pediatric neurologist who was very knowledgeable in the subject of autism. She gave me some advice that was extremely helpful and has made a tremendous difference in the way Marisa has turned out. She said, "No matter how intelligent your daughter may be, the single most important thing you can do is get her behaviors under control, because that will greatly improve her prognosis." From that moment on, I was determined to set up a working behavior plan that Marisa continues to use today to self-monitor her behaviors. The trick is to pick goals that are achievable,
and offer rewards chosen by the individual. Goals change over time, but the concept remains the same. Marisa earns a certain number of points toward a goal of her choosing. It usually takes her about a month to earn her reward. Of course for a younger child the number of stars or points could be less, because young children may not be able to wait as long for a reward. The idea is to be flexible, and mold the behavior plan to the individual child. A parent once said to me that she thought I was spoiling Marisa by rewarding her with gifts she chose. I said, "Don't we all get rewarded by doing jobs well? Nobody does something for nothing. Most of us get paid for work. That's an incentive and reward after all."
A behavior specialist once asked me, "What are your goals for Marisa's future as an adult?" I thought about it and replied that she would probably live in a group home or a supported apartment because her judgement was poor, but hopefully she would be able to have some kind of job that she would enjoy.
Then he said, "So strive to help Marisa become as independent as she can, so she will be able to get into the best supported living arrangement possible." I always considered this excellent advice. It has motivated me to keep working on Marisa's ADL (activities of daily living) skills.
It's also important for parents to face up to the fact that they will have to plan, and plan early. While our kids are in school, parents would like to believe all is taken care of. Many parents struggle to get services in regular public school programs. Some have their kids go out of district to special schools. Parents are happy when they get the services they want for their child. Some of these kids will be able to graduate from regular schools with regular diplomas and then go on to college. However, it may be a struggle, because in many cases, social skills have been neglected. The result is that many of these kids will have a hard time navigating the college experience on their own.
Others that are not as academically able, will be able to stay in school till they are 21, because by law they are entitled to a free, public education up till that age. However, upon graduating, all services end. Then parents are faced with a rude awakening. Transition planning is supposed to start at age 14, and it is important that parents insist on this from their school districts. Many parents don't want to think about this, so they put off planning till the last year. This is way to late. And what is transition planning supposed to mean? Many parents don't understand that either. There are a number of things that parents need to do:
Before age 18 they need to legally become their child's guardian because once kids turn 18, they can no longer make decisions for their child without legal guardianship. Health insurance companies won't even talk to you, and if your child can't handle their own medical decisions this could be a major problem.
Most important is establishing eligibility from OPWDD (Office for People With Developmental Disabilities). This requires sending psychological test scores to the OPWDD doctor who reviews the child's scores. Eligibility for services requires IQ be below a certain number. If the score is too high, it's important to have a Vineland Second Edition test done. The Vineland tests adaptive living skill level and establishes if the child actually would need assistance in living, even though they may be very capable academically. Parents need to insist on having the required tests for eligibility of OPWDD services done while their child is still in school. This is part of the schools responsibility and should be considered part of the transition planning. Once the child graduates, any testing becomes the responsibility of the parent.
Also parents should apply for SSI (Supplemental Security Income) when their child turns 18. Actually, they are able to apply before 18, but social security decisions are based on family income before age 18.
After age 18, the parents income is no longer included in the decision, and since the disabled child is entitled to receive SSI, it's a good idea to apply as soon as they are 18 years of age. Also, once SSI is received, Medicaid automatically kicks in. Medicaid is important, not so much for the medical insurance, but for the services that are granted through Medicaid. Parents need Medicaid benefits to receive services from OPWDD. These services include Service Coordination which is important to have in order to navigate programs once the child has aged out of school. Of course, to receive services from OPWDD, one needs to have established eligibility, as I mentioned in the above paragraph.
There are so many resources available to parents today. The Internet makes it easy to find many of these wonderful resources. On Long Island we have AHA which is The Asperger Syndrome and High Functioning Autism Association. They have expanded and grown and have a wonderful on-line newsletter at www.ahany.org. There's also the Cody Center at Stony Brook University in Suffolk County and The Fay J. Lindner Center for Autism n Nassau County. In New York City there is an agency called JOBPATH that helps graduates with disabilities find jobs and helps them have smooth transitions in to the working world. In New York State there are numerous other organizations and agencies to call on for help:
Parent to Parent of NYS at www.parenttoparentnys.org
The Jewish Child Care Association at www.jccany.org
The Long Island Advocacy Center at www.theLIAC.org
There are numerous Jewish Community Centers throughout Long Island and the entire Metropolitan area. The Sid Jacobson JCC, The Plainview JCC and most recently The Oceanside JCC have programs to help children with special needs on Long Island.
The bottom line in tips for parents?
Plan, plan, plan and do it early. It will make your life less stressful and easier when your child is grown and ready to go out into the world. Don't put anything off till later, and face the fact that there's a disability to deal with. If your child grows up and grows out of the problem, that's great, but most don't grow out of the problem. Autism is a life long disability. Learn to accept, embrace and work with it. Don't turn a blind eye expecting the schools to do all the work. You have to do your part. You'll reap the benefits later if you do, and your child will be there to thank you in their hearts if not in their words.
Before my son turned 18 i also got him a passport and bank account:)
ReplyDeleteThis is wonderful information. Thanks so much. Diane G.
ReplyDeleteI might also mention that once our special needs children turn 18, it's also imperative to have official ID as Casdok mentioned. For those that are not going to learn to drive a car, it's important to obtain a non-driver's ID if one is not going to obtain a passport.
ReplyDelete