DawnM Posted March 18, 2015 Share Posted March 18, 2015 I need some help from those of you who have gone down this road before. My son is now 17. We have found out that if we wish to get permanent guardianship (legal term, it can be revoked at any time) of our son, now is the time to start the process. Those of you who have been down this road, questions: 1. Did you do this before age 18? (this is what has been recommended to us) 2. Did you just go find a lawyer and find out more info that way? How did you find your lawyer? 3. Did you also seek SS or Disability benefits through that same lawyer? We are so clueless. We really thought we could just see him mature enough so that this wouldn't be necessary, but it is looking like we are dealing with some regression on his part. My MAIN concern is health benefits past the age of 26. Now, it could very well be that at age 27 his maturity is such that he can hold down a job without an issue, but at 17 it sure isn't looking anything like that to us. There just aren't that many people who have been down this road that we know personally other than those with kids with severe issues like Downs and such. Our son has Asperger's and to meet him you may not even know there is an issue, until well, until there is. Dawn Quote Link to comment Share on other sites More sharing options...
MyLittleBears Posted March 18, 2015 Share Posted March 18, 2015 I'm wondering if the neuropsych who gave your ds his diagnosis (or whoever did it) would have a better idea. My ds is 14 and newly diagnosed w/ASD but I've wondered the same thing. Our neuropsychologist talked to us a little about it but given his age she seemed to think we needed to get used to the diagnosis before thinking about guardianship. But I'm starting to wonder about the same things you are. Sorry I'm not much help. Just offering an idea. :grouphug: Quote Link to comment Share on other sites More sharing options...
cherylswope Posted March 18, 2015 Share Posted March 18, 2015 I need some help from those of you who have gone down this road before. My son is now 17. We have found out that if we wish to get permanent guardianship (legal term, it can be revoked at any time) of our son, now is the time to start the process. Those of you who have been down this road, questions: 1. Did you do this before age 18? (this is what has been recommended to us) 2. Did you just go find a lawyer and find out more info that way? How did you find your lawyer? 3. Did you also seek SS or Disability benefits through that same lawyer? We are so clueless. We really thought we could just see him mature enough so that this wouldn't be necessary, but it is looking like we are dealing with some regression on his part. My MAIN concern is health benefits past the age of 26. Now, it could very well be that at age 27 his maturity is such that he can hold down a job without an issue, but at 17 it sure isn't looking anything like that to us. There just aren't that many people who have been down this road that we know personally other than those with kids with severe issues like Downs and such. Our son has Asperger's and to meet him you may not even know there is an issue, until well, until there is. Dawn Hi, Dawn. Your post caught my eye. We began clueless too, so I am sensitive to this topic. You will learn quite a bit in the next year! Like your son, our twins (boy/girl) are on the autism spectrum and both appear "higher functioning" to people who meet them; yet both need great care and continual supervision. When our twins turned 17, we began the process, because one of my children's doctors advised this. (I wondered why we needed an entire year. I soon learned!) Every step takes time, but you can do this. You will streamline everything by completing the entire process before your son turns 18. It seems that requirements change dramatically when children are no longer minors! We followed these steps: 1. Find a compassionate attorney. We found a local attorney who handles legal guardianship. (My husband is an attorney, so he selected someone he respects.) To save time (and legal costs), I gathered as much as I could prior to the meeting. I placed in each child's folder a birth certificate, SSN card, updated lists of doctors with addresses/FAX/phone, updated lists of medications & diagnoses, and assorted records to show the history (i.e., chronic nature) of the disabilities. This included a sampling of PT/OT/Speech/Testing records from years ago, as well as current records. 2. Give the attorney good information. I gave the attorney sufficient contact information, so he could send needed forms to doctors. 3. Alert your doctors about the forms. I emailed or called our busiest doctors to give them a heads-up that these forms would be coming. I expressed how much we would appreciate their completing these forms before the end of the month. 4. Inform doctors about day-to-day implications of your son's disabilities. For some doctors who might not otherwise know the details of our children's daily life, I included ways our children's challenges interfere significantly with self-care and independence, so the doctors understood why we were seeking legal guardianship. -inability to administer medications independently -inability to manage public transportation or medical appointments independently -inability to work full-time or even part-time without someone else's guidance, supervision, and communication with employers -inability to maintain basic self-care and hygiene without guidance and supervision -extreme vulnerabilty due to misperceptions, naivete and immaturity, and difficulties reading social cues -our grave concerns for our children's well-being and safety, if they were left on their own After all, despite the many gains we see in our children and the many aspects that make our children endearing to us, "Independence at 18" is a serious matter. 5. Listen to your own attorney and expect a new attorney to be involved. Our attorney guided us through this next process. Each child was appointed a legal representative. We made appointments with the children's attorneys. 6. Don't forget the children. We explained to our children in simple terms everything that was occurring. My husband assured our children that nothing would change for them. We would continue to be their parents; and we would now become their legal guardians too. We explained that this allows us legally to continue to help them at doctors' appointments, help them with their medications, and help them achieve all of the goals they have for themselves. We explained that the law sees "18" as a different time, so we were fulfilling the needed requirements to continue helping them, just as we have all along. With this as a backdrop, we all met with each child's attorney. (Each child was appointed an attorney separate from our own.) The attorney chatted briefly with his appointed child. The child answered simple questions. "What are your favorite subjects in school?" "What are your goals for yourself for the future?" "How do you spend a typical day?" "What do you like to do in your free time?" Btw, this may be the one time to let shirts remain on backwards, shoes untied, hair unbrushed, pockets hanging out of pants, or otherwise refrain from the cues you give each day. The attorney wants to see the child at his typical, not at his best. 7. Stay on top of things. When all steps had been followed from our end, I asked our attorney if anything remained. We learned that one key doctor had not filled his reports! I contacted his nurse who is especially fond of my daughter. I asked the nurse to expedite. She placed these forms in our busy doctor's hands, and we had them within a week or two. 8. Prepare for court day. Just days before our children turned 18, we all met in court -- my husband & me, our attorney, and each of our children's attorneys. The children received a waiver, so they did not need to be present. When possible, I avoid sharing the dire nature of my children's disabilities (schizophrenia, autism, etc.) in front of them in such a stark way, without the balance of how many strengths, talents, and abilities they possess. The sterile court proceeding would not have allowed for giving a more humanizing picture, and I also did not want to worry our children needlessly by the terminology. The attorneys agreed that the children did not need to be present. (Other 17yo's might find it all fascinating from a political science perspective, but we thought it best to proceed this way.) 9. Reassure. Beforehand, I assured the children that they would retain just as many decisions about their own future as before. This was especially important for my son. I let him know that "legal guardianship" would not affect his ability to work, to attend college, or to enjoy hobbies. I told our children that we would celebrate afterward, because just like the legal adoption that occurred so many years ago, this proceeding would mean that we could continue to care for them, just as we have been doing all along! We could help them make good decisions, stay in the good care of their doctors, and be kept safe. With relief and joy, we celebrated with a "legal guardianship" meal afterward! A few tips: -Apply for conservatorship at the same time, if your son has difficulties managing his own money, budgeting, and saving. We did this all at once, so we were made legal guardians and conservators all at once. -When this is all over, carry those legal guardianship papers with you everywhere. Each doctor will need copies after your son's 18th birthday. -Realize that SSI/Medicaid are entirely separate activities from the guardianship process. These will be completed in a separate application through state/govt agencies. You could hire an attorney for these steps, or you can navigate through SSI/Medicaid yourself. See this thread. -As mentioned in the linked thread, each step assists the next. When you apply for SSI/Medicaid, your legal guardianship status helps the evaluation for SSI which then assists the evaluation for Medicaid. After 26: You also mentioned health insurance after 26. You can ask about this when you apply for SSI/Medicaid. Our children were awarded both indefinitely, as long as their medical/neurological conditions remain the same. In our state, we were not allowed to apply for SSI/Medicaid until our children turned 18. By then legal guardianship was in place. By the time all was approved, they also granted back payments to their 18th birthday. Handbook Needed: I hope that helps! I looked for a "handbook" on all of this but found little to guide us, so I feel for you! But our doctors assured us that we made everything much easier, simply by accomplishing the legal guardianship prior to age 18. I enjoy reading here when the MP Forum is calm, so feel free to follow up if needed. Cheryl Simply Classical: A Beautiful Education for Any Child 12 Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted March 18, 2015 Share Posted March 18, 2015 Here's some base information: http://www.cincinnatichildrens.org/patients/child/special-needs/transition/guardianship/ The additional resources section contains some guides. Also, this site offers a chapter on preparing financially: http://phdinspecialeducation.com/special-needs-parenting-handbook/ If your state or region has a support group for adults with disabilities, they may be a good source for attorney recommendations. Take your time to actually listen to the attorney and get a feel for whether he or she is a good fit for you. There are attorneys who just churn SS benefit filings and others who can do full estate planning for you and actually understand the implications of having a child with SNs. Powers of attorney are easier to get than full guardianships and you might get those in place as an interim step. I think it is important to do the homework, even if that takes more time so that you can get the best set up for your child. But, you are wise to investigate because it is something that not all parents think of and then later find themselves in a crisis situation and in need. :grouphug: Quote Link to comment Share on other sites More sharing options...
Princess Ariel Posted March 18, 2015 Share Posted March 18, 2015 I have concerns in this area as well. Thank you, Cheryl, for your very clear explanation. Quote Link to comment Share on other sites More sharing options...
DawnM Posted March 18, 2015 Author Share Posted March 18, 2015 Thank you so much. When you say to find an attorney who handles this, could it be a lawyer who handles general estate planning? Now that you have said that I realize there is a man in our church who people really like (he also leads some seminars on prayer in our church), who is an estate lawyer. DH and really need to have our estate plans in place as well, and should go see him about that anyway, so we may be able to get it all done through him. Hmmmmm....... Dawn Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted March 18, 2015 Share Posted March 18, 2015 Cheryl - Thanks so much for taking the time to write that up. It's a wonderful check list. My guy is only 13 and we've known about guardianship for years but you have made the process seem less daunting. Quote Link to comment Share on other sites More sharing options...
DawnM Posted March 19, 2015 Author Share Posted March 19, 2015 One thing to add: be very sure you want to do this. It is true that guardianship can be revoked at a later date, but convincing a judge that a person who was once incompetent is now suddenly competent is a very difficult hill to climb. Also, you do not have to have guardianship for your child/adult to qualify for Medicaid. Also, Catholic Charities can do guardianship for a fraction of the cost of an attorney. This might be a dumb question, but can we apply for SSI/Disability without claiming guardianship? Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted March 19, 2015 Share Posted March 19, 2015 Absolutely, SS and guardianship are two completely different situations. One speaks only of the ability to financially provide for oneself and the other to complete incompetence to make all decisions. 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 20, 2015 Share Posted March 20, 2015 Cheryl provided a lot of helpful information. Each state is a bit different. Here is Michigan it is very difficult to get a guardianship without an IQ in the mentally impaired range. We have a daughter with an IQ just above that and we could not get guardianship. Instead we had the lawyer draw up power of attorney, patient advocate and other legal papers that she signed which basically gave us most of the powers of guardianship. Our son was only granted guardianship for 5 years at a time. We have to have him tested and see a lawyer and go to court every 5 years and his IQ is in the mid 50s. The judge was very sympathetic and said he would love to grand full permanent guardianship to us but the law is very strict on that............even though this judge has known our son since he was 7 years old and did his adoption and sees that his mental impairment has been stable all along. Our other daughter we did get full permanent guardianship as in addition to a lower IQ she has tons of mental health and medical issues. SSI is completely different. We did that without a lawyer and was granted it within days of application. The 2 with SSI also get medicaid. For estate planning you will want to find out about a special needs trust so that any assets that would go to your child instead go into a trust that is managed by someone else. Otherwise, they would lose their SSI benefits as they would have too much money/assets. It is expensive to get this all done. About $1000 for the initial trust and $500 for modifications. Then $500 for testing for my son every 5 years and on and on............all payable by dh and I just to protect them. 3 Quote Link to comment Share on other sites More sharing options...
DawnM Posted April 1, 2015 Author Share Posted April 1, 2015 Ok, after talking to a lot of people about this and getting more info, here is what we have decided to do: Forget guardianship, his two therapists don't think this is the best route. Possibly seek Power of Attorney for medical stuff. Definitely apply for SSI by the age of 18. We have been told it would probably be denied, but IF he re-applies or needs to at 26 (the age his health insurance with us will go away), he will receive benefits retroactive to age 18. If we wait to see if we need it, and apply at 26, the benefits start at age 26. At least we have a direction. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted April 1, 2015 Share Posted April 1, 2015 You don't need to wait until 18 to apply for SSI. There is SSI for children and getting him deemed "disabled" as a minor I've been told can help with making the case to get SSI after the 18th birthday. Similar to how having the child deemed eligible for Early Intervention services before 3 makes it more likely to get approved for special education services after the 3rd birthday. There is no guarantee of continued eligibility, but it's better to have the paper trail even if it's more hoop-jumping. 2 Quote Link to comment Share on other sites More sharing options...
DawnM Posted April 12, 2015 Author Share Posted April 12, 2015 You don't need to wait until 18 to apply for SSI. There is SSI for children and getting him deemed "disabled" as a minor I've been told can help with making the case to get SSI after the 18th birthday. Similar to how having the child deemed eligible for Early Intervention services before 3 makes it more likely to get approved for special education services after the 3rd birthday. There is no guarantee of continued eligibility, but it's better to have the paper trail even if it's more hoop-jumping. Well, he is 17 and has never been in school, so we haven't done anything other than have him tested and diagnosed for the first time at age 14. This would be the first time we are seeking any sort of SSI. Quote Link to comment Share on other sites More sharing options...
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