IEPs loom large in the lives of parents of kids with special needs. From birth to age 21, those individualized educational plans shape a child’s schooling, therapy, and care plans. But what happens after age 21? How can parents prepare ahead of time so they know where to find resources and support?
LifeAfterIEPs.com
One fine resource is Maria Mazzoni’s website www.LifeAfterIEPs.com. It is loaded with resources for parents of teens with special needs to prepare them for, well, life after IEPs. It is an amazing site, rich with resources, well-organized, and hopeful. I love hopeful. You can sign up for a free weekly newsletter to receive tips about IEPs and transition planning.
Parent Survey Results
In July, Mazzoni compiled the results of a parent survey she conducted about what parents see as their greatest needs after IEPs. She asked for feedback about the following topics:
- Transition Assessment
- Goals and Transition Activities in IEP
- Financial Issues
- Career and Employment Planning
- Planning for Postsecondary Education or Training
- Guardianship and Legal Issues
- Healthcare
- Navigating Adult Agencies
- Safety
- Developing a Support Network
- Sexuality
- Social and Recreation
And the results looked like this:
Read About the Life After IEPs Survey
The above list and the graph barely touch the surface of the information Mazzoni shared in her July 4 post, Parent Survey Results Are In! The number of links and survey analysis included in the post is astonishing, so be sure to stop by and give it a read. Also, she plans to blog further about each item in the survey, so check back often to see what she has to say. (When this DifferentDream.com post was written, the first post in the series You want to grow your personal networks had already gone up.)
What Resources for Adult Children Do You Know About?
The majority of Different Dream readers have younger children. But some of you, including guest blogger Kathy Guzzo, are parenting adults with a variety of special needs. What resources does your child tap into? What advice do you have for parents who are initiating the transition process for their teens? Leave a comment to share your wisdom.
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Martha,
I am so sorry to hear of the difficulties and lack of support you’ve faced. Your son is blessed to have a mother who advocates for him. Your story can be an example to parents of younger children about the importance of starting early preparations for their kids’ adulthood. Thank you for being so open. I will be praying for you and your son.
Jolene
Martha,
I am so sorry to hear of the difficulties and lack of support you’ve faced. Your son is blessed to have a mother who advocates for him. Your story can be an example to parents of younger children about the importance of starting early preparations for their kids’ adulthood. Thank you for being so open. I will be praying for you and your son.
Jolene
I hope individuals with disabilities can eventually transition smoothly from school to life as an adult. I am pretty experienced with this as I have a son with autism, IDD and medical issues who is age 39 years old and I am age 74. It is scary out there, believe me. I live near San Antonio and the opportunities after transition are minimal. There is a huge waiting list for services and the system is set up as a first come first serve so people with severe needs may rest at the bottom. Some like my son need support for employment and with this system of limited job coaching until the person can work on their own with minimal to no support does not work for my son who needs help all the time with social skills and needs human interpretation for every step of the way. My son lives in his own apartment, section 8 that I paired it with, has a Home and community based services program slot, and has a companion living with him and goes out into the community for five hours Monday through Friday. Still I can not get speech therapy and ABA is nonexistant for adults. He needs a communication device that I can’t afford and so he manages with the few words he can speak. That is life after IEP’s.
I hope individuals with disabilities can eventually transition smoothly from school to life as an adult. I am pretty experienced with this as I have a son with autism, IDD and medical issues who is age 39 years old and I am age 74. It is scary out there, believe me. I live near San Antonio and the opportunities after transition are minimal. There is a huge waiting list for services and the system is set up as a first come first serve so people with severe needs may rest at the bottom. Some like my son need support for employment and with this system of limited job coaching until the person can work on their own with minimal to no support does not work for my son who needs help all the time with social skills and needs human interpretation for every step of the way. My son lives in his own apartment, section 8 that I paired it with, has a Home and community based services program slot, and has a companion living with him and goes out into the community for five hours Monday through Friday. Still I can not get speech therapy and ABA is nonexistant for adults. He needs a communication device that I can’t afford and so he manages with the few words he can speak. That is life after IEP’s.
Thanks, Rob. Most of the thanks goes to Mary at Life After IEPs, though. She’s the expert.
Jolene
Thanks, Rob. Most of the thanks goes to Mary at Life After IEPs, though. She’s the expert.
Jolene
Michelle,
Sorry to hear your experience hasn’t been as positive as Harriet’s. Good case managers, like good therapists and teachers and doctors, are jewels!
Jolene
Michelle,
Sorry to hear your experience hasn’t been as positive as Harriet’s. Good case managers, like good therapists and teachers and doctors, are jewels!
Jolene
Great information of a topic that is ignored by most in the field.
Great information of a topic that is ignored by most in the field.
A case manager? How cool would that be … and here I always thought that was Mom’s (my) job. I do agree, though, Life After IEPs is a great site. Keep up the good work!
A case manager? How cool would that be … and here I always thought that was Mom’s (my) job. I do agree, though, Life After IEPs is a great site. Keep up the good work!
Mary,
You are very welcome. Thanks for the kind words about Different Dream. I would say the same think about Life After IEPs. Parents of kids with special needs of any age should run, not walk to the site. Even though your children may be young now, Mary’s site can prepare you for the years to come.
Jolene
Mary,
You are very welcome. Thanks for the kind words about Different Dream. I would say the same think about Life After IEPs. Parents of kids with special needs of any age should run, not walk to the site. Even though your children may be young now, Mary’s site can prepare you for the years to come.
Jolene
What an amazing vision Tim has! I love that this initiative is spearheaded by the parent of kids with autism. Readers, check out the website to see what bold thinking can accomplish.
Jolene
What an amazing vision Tim has! I love that this initiative is spearheaded by the parent of kids with autism. Readers, check out the website to see what bold thinking can accomplish.
Jolene
Sorry to hear that, Stacey. Maybe it’s time to take a page from Harriet’s book and look for a different case worker.
Jolene
Sorry to hear that, Stacey. Maybe it’s time to take a page from Harriet’s book and look for a different case worker.
Jolene
My daughter’s case manager contacts us when it’s time to “re-eval”. That’s it! I’ve found the services around here to be wastes of time.
My daughter’s case manager contacts us when it’s time to “re-eval”. That’s it! I’ve found the services around here to be wastes of time.
This is a wonderful blog post and I love the fact that you included the findings of the survey. It puts real data towards what parents know and feel as their children enter adulthood. Such important information for states and even our government at the national level can (and should) use as transition issues are addressed.
Please check out this website today and share your thoughts on here about what you see and read http://www.touchdowncommunities.com
Touchdown Communities is a new non-profit, nationwide effort to create state-of-the-art living communities for young adults with autism and related disorders. It is a never-before-done project that has the mission of supporting this under-served population with opportunities for continued social development and growth (through personal coaches and a Guiding Program), ongoing social activities, and exciting employment options in a semi-independent living community. We have just launched our website (www.touchdowncommunities.com) and are looking to spread the word and generate support and interest in this essential mission. Please share!
This is a wonderful blog post and I love the fact that you included the findings of the survey. It puts real data towards what parents know and feel as their children enter adulthood. Such important information for states and even our government at the national level can (and should) use as transition issues are addressed.
Please check out this website today and share your thoughts on here about what you see and read http://www.touchdowncommunities.com
Touchdown Communities is a new non-profit, nationwide effort to create state-of-the-art living communities for young adults with autism and related disorders. It is a never-before-done project that has the mission of supporting this under-served population with opportunities for continued social development and growth (through personal coaches and a Guiding Program), ongoing social activities, and exciting employment options in a semi-independent living community. We have just launched our website (www.touchdowncommunities.com) and are looking to spread the word and generate support and interest in this essential mission. Please share!
Jolene,
Thank you so much for writing about and linking to Life After IEPs.
Different Dream is a marvelous site with an abundance of resources, encouragement and support. I’m truly honored that you’ve included Life After IEPs. I so agree that it is by sharing information, wisdom, encouragement, and hope – that we all grow and prosper.
All the best to you and to all the families in the Different Dream community.
Mary
Jolene,
Thank you so much for writing about and linking to Life After IEPs.
Different Dream is a marvelous site with an abundance of resources, encouragement and support. I’m truly honored that you’ve included Life After IEPs. I so agree that it is by sharing information, wisdom, encouragement, and hope – that we all grow and prosper.
All the best to you and to all the families in the Different Dream community.
Mary
Harriet,
What an excellent suggestion. Having the right case manager makes a huge difference.
Jolene
Harriet,
What an excellent suggestion. Having the right case manager makes a huge difference.
Jolene
This is a great and important post. Thank you.
I have an adult daughter with disabilities. The best resource I have is a phenomenal case manager. She has been my dauther’s best advocate in all areas of her life – jobs, coaches, group home. So my advice is get a great one even if it takes going through a few before finding that special one who goes the extra mile out of true caring.
This is a great and important post. Thank you.
I have an adult daughter with disabilities. The best resource I have is a phenomenal case manager. She has been my dauther’s best advocate in all areas of her life – jobs, coaches, group home. So my advice is get a great one even if it takes going through a few before finding that special one who goes the extra mile out of true caring.