When Brandon was born I never thought about school districts, community, living independently and inclusion. I was just trying to figure how to care for Brandon and hope that he stayed healthy. Brandon was eligible for ECI (early childhood intervention) benefits soon after we left the hospital. Those services were maintained until Brandon turned three and he was eligible for services through the school system. At the time Brandon and I lived behind DPS in Austin. I loved that house. I had a sound proof room for all the music I had going on at the time, it was paid off and it was close to everything. But what I didn't like was the school district. Where we lived did not have school services for kids at the age of 3. I never really thought about the school district when we bought the house many years before Brandon was born. AISD offered services in several school districts surrounding the area. We choose the elementary school program in northwest hills. I knew this program would be fine for a few years but I needed to make a decision about where we should live and where Brandon should go to school before kindergarten. I thought about living in Austin at various school districts. I thought about the Eanes School district and then I looked at those in the suburbs surrounding Austin. At the time several districts in the suburbs had class action suits concerning special ed students or they did not have a great reputation.
I decided that in the long run it would be better to live in smaller community where people would think of Brandon as part of the community for his life and would be more willing to be part of his solution to living independently. The thought is if Brandon was in the school with his peers who's parents were also part of the community people in the community would get to know him and be more comfortable supporting him in the future. Plus, I also believe a smaller community is a safer environment. There is always the problem with transportation but smaller communities always seem to come up with solutions. I still believe this for Brandon's future. But what I didn't know is that smaller community schools do not have the resources for some kids as complicated as Brandon.
So Brandon and I sold our house in town and built a house in Dripping Springs after I did a great deal of research on school districts. Dripping Springs really tried to educate Brandon as best they could but they just did not have the expertise for a kid with multiple challenges. What they did do great was a sense of community. Brandon was known by all the kids in his class by name and he participated in all the same events his peers participated in. The school really didn't have the resources to separate kids, so some form of inclusion naturally happened. However, it became clear that the school just did not know how to educate Brandon and did not have the resources to address his multiple challenges. We ended up in a lawsuit with the school over the school's ability to perform a psychological evaluation on Brandon. The school wanted to do this evalution on their own, but refused to provide me with the names of the tests the school would use to do the evaluation. Some tests are not appropriate for kids who are non-verbal and we wanted to make sure those were not used to evaluate Brandon. The school refused to provide the names of the tests and they filed suit against Brandon (there is now a law that requires the schools to provide the names of the tests). We were in courts for 1 1/2 years until I finally realized I was trying to get a school to educate Brandon in the way I felt he needed to be educated but the school was never going to be able to meet his needs. It was a very sad day when I removed him from school and began homeschooling him.
For the next 18 months I hired a special education teacher, many UT students and other volunteers. We tested Brandon's levels and found he was below grade 1 on some subjects and about 18 months behind on others, so we started all over in his education and the TEKS and by the end of 18 months he was reading at a 4th grade level, he was using his communication device in full sentences and he was ready to go to a new school. What he was missing was socialization. For a kid like Brandon who is non-verbal that is very big. We also found out during that period of time that Brandon has vision problems which made learning so much harder.
I looked around at surrounding school districts and my choices were Southwest Austin, Lakeway and Eanes. I still was of the belief that a small community is where Brandon should ultimately be, but this was a temporary setback for 6 more years. I looked at renting a place in Eanes or buying property after I compared the districts. We found a place in Eanes with a mobile home that needed a great deal of repair but was liveable. The elderly woman who owned the property had a child with cerebral palsy who died at age 16. She really wanted us to have her property and we really liked her. We closed in two weeks. Brandon and I fixed up the property, and had it completely furnished and ready for when school began. Brandon started school in the Eanes school district in middle school. I cant really say enough good things about his education. He has vision services, speech, use of his communication device, he has been in band, choir, drama, film classes and special Olympics. It really was night and day difference between what he was receiving in Dripping Springs academically. But I do think Brandon has lost the sense of community. Eanes' model tends to isolate the kids in their own classes with the exception of about 1 or 2 semi-inclusion classes a semester. We gave up the community for education for 6 years. Brandon will graduate as a senior in May. Over the six years we stayed less and less on the property in Eanes, but have owned it, paid the bills in it and payed taxes on it. I have provided transportation for Brandon to and from school and we have worked to maintain the Eanes property.
After Brandon graduates he will continue with the 19+ program. The 19+ program is a program designed to transition young adults into the community, help them become as independent as possible and train them for jobs for adulthood. This is the most intensive program Brandon will have access to as a young adult. He will have three years to work through the transition and then he is on his own. There are other adult programs but none as intensive as these last three years of school. So I believe I need for Brandon to be in the best program possible to meet his needs.
As Brandon moved through this year I re-approached Dripping Springs because I still believe a smaller community is a better fit for Brandon for support and job opportunities. I found out that Brandon would be the only child in Dripping Springs 19+ program and that he would most likely get his job skills and independence training on campus at the high school because we would be the only kid and because of lack of resources for one child. The Eanes 19+ program has over 30 kids in the program and is housed off campus. In Eanes Brandon is already working off campus every single day. We will be able to develop his own schedule which will include exercise, socialization, job training and independence. However due to budget crunches Eanes has questioned our residency status for next year's eligibility. So we need to make some tough choices. The most powerful input I have received was from another parent who told me that Brandon only has 3 more years in which to get Brandon his most intensive training and I really need to utilize the next 3 years to give Brandon to most opportunity for the future.
Reluctantly, I have made the decision to move into the Eanes School District for possibly the next three years. I will still have our place in Dripping Springs, but will try to rent it out because I really love our place here. I put a contract on a condo close to Zilker a few weeks ago. It is within walking distance from the walking trails, has a great swimming pool, is in a secure complex and has a fabulous view of the greenbelt. I was the best option for living in the district. I am still working through the details of the closing, but I am fairly sure we should be able to close in early May and get the place ready to move in over the summer. I know - I will own three places, two of which I don't really want to own. Sometimes life takes you in strange directions. I also know that to some of you, you may think this is very extreme for Brandon's access to education. I really wont feel good about myself unless I can say I have done everything I possibly can do to help Brandon be a success for the future. What will we do in three years? I have no idea for now but I will let you know.
So for now I am seeing some changes in the future and I am thinking they are only for the best. I still believe in community and don't know what is next in the future. So stayed tuned.
Leah
Thursday, March 24, 2011
Wednesday, March 9, 2011
SSI and Power of Attorney
Well I said I would post about getting the Power of Attorney for Brandon completed and the SSI process. I hope this will help some other parent trying to go through this. If you are reading this, please know that this is once again probably meant for parents trying to go through the process. It is fairly technical. I have talked to many parents to try and get the best tips while going through the process and I have found that applying for SSI and guardianship/POA are a once in a lifetime process that parents quickly would like to forget. So I will probably not remember much about this in 1 year from now but for the moment it is fresh on my mind.
Power of Attorney. I struggled with whether to do a power of attorney for Brandon or go through guardianship. I still have many people telling me that down the road I may have to consider guardianship. But I also have a power of attorney for my 89 year old mom with dementia and it works very well for medical and financial issues. I discussed both options with our trust attorney who has an adult sibling with disabilities. She helped me decide. Brandon does understand everything you say to him within reason and can write his own signature, although nobody knows what it says. That could be a Rummel trait. The question is would a judge be willing to take away rights from Brandon if he can make some decisions on his own. So I decided that Brandon was able to consent to give me power of attorney rights and we would go with the option for now. If down the road I have to consider guardianship I will go back and consider the options, but for now Brandon has his full rights as an adult, he can vote, date, get married (scary) and make full decisions. I can help him with those decisions when they involve medical and financial.
Because I went with this option Brandon is now his own employer with the CLASS consumer directed program. He had to apply for an employer identification number (Tax ID) and sign many papers. I am his designated representative for purposes of this CDS which he did consent.
Social Security Process - Now for application for SSI. I did have to think about whether I wanted to go forward with this application until Brandon is living independently. I decided to move forward right after Brandon's 18th birthday for several reasons. First, applying between 18-22 allows for an easier rate of approval. If you read the SSI information persons totally disabled since birth have several categories where there is almost automatic approval. After 22, it is harder to prove that the disability has been a lifetime disability. Second, I am starting to think that one day I may want to retire and I need to start thinking about Brandon as any child that will need to provide for himself so at retirement I can provide just for myself. Third, if something happened to me tomorrow no one else will have to go through the process of trying to get Brandon's records together and go through all these processes. He would transition much smoother. Also, for purposes of benefits Brandon will be classified as SSI disabled meeting the income guidelines. So I took one class, had a private consult, talked to many parents and read alot on how to apply. I think the best information was on the SSI website and then the information I got from other parents was great. So here is where I started.
Application for consideration of medical conditions - First, you now apply on line and there is a two step on-line process. This is the link to entering general information and getting the process started. http://www.socialsecurity.gov/applyfordisability/. This will ask for basic information about the person with disabilities. After you complete this step you need to go to the Adult Disability Report. https://secure.ssa.gov/apps6z/radr/radr-fe
This is where you enter all the medical information, the names of the physicians or other providers to contact and some information about how that applies to work. I read through all the SSI info and found several key facts. There is a list of illnesses that with medical proof will qualify a person for benefits. The first list is the compassionate allowances. http://www.socialsecurity.gov/compassionateallowances/ Once a person is diagnosed with one of these illnesses a person automatically qualifies for the medical portion of the decision. If you are working on applying, take a look at the list. If they work for your situation then you want to focus the names of your physicians and other providers to just confirm this illness and really no other paperwork is required.
Severe Medical Conditions - Brandon does not meet the definition of compassionate allowance. So the next category is the listing of medical conditions that are so severe they qualify a person for approval in the medical category. http://www.socialsecurity.gov/disability/professionals/bluebook/listing-impairments.htm I went through all the conditions with several friends (this was though to read through for me and listing all the bad things Brandon has been diagnosed with). My friends were very helpful working with me to go through each category and identifying Brandon's conditions. We quickly discovered that Brandon easily qualified in four categories. He has many others but they are not on the list and not worth spending time listing and identifying the doctors. I concentrated the application on those four conditions. I am not sure my process is the usual process, but I took off a day to complete the application. I finished answering the questions on part 1 which is the general application and started on part two. I needed to look up some providers on part two and stopped for the day to go through the many boxes of records to find a physician's name. However, the next day someone called for Brandon and I realized it was the SSI office. They asked if I could complete part two the next day so I finished part two a little faster than I thought I would. In the meantime, they sent a release form for Brandon to sign and asked for any records to be sent in at the same time. I had been told don't bother sending records, but I decided to send two records. The school's 3 year assessment which was very thorough and a medical record identifying Brandon as having cerebral palsy at 9 months old proving that his condition was diagnosed at birth. I returned the form and the records and the next week received a call asking me questions about how the medical conditions applied to Brandon's ability to work. The SSI worker completed a form with these questions based on our conversation. It came in the mail a few days later and I signed and sent it back. The form has many questions about Brandon's condition and how that would apply to his ability to work. She called back and asked a few other basic questions and said the whole thing had gone to a medical director and I should have a decision in two weeks for the medical portion of the application. However, she hinted that Brandon was approved for the medical portion. Brandon was approved for the medical part of the application at that point.
Financial Consideration - Within a few days I received another call to come in with Brandon's financial records. Brandon and I went to the SSI office to provide the financial documents. They asked for his bank records, information on the trust accounts and information on life insurance benefits. The trust accounts make the determination more complicated. The SSI worker went through Brandon's accounts, Brandon's trust accounts, asked information on my financial information and reviewed the trust documents. Remember Brandon cannot have more than $2000 in assets. The most time consuming process was the review of the trusts. The SSI worker sent both Brandon's child support trust and his family trust to the main SSI office for review by their attorneys. I guess the wording was correct, but in the approval information I was cautioned that when using any of the trust money it must be reported and possibly considered as income if not following the guidelines from Medicaid. Here are the links they referenced. https://secure.ssa.gov/apps10/poms.nsf/lnx/0501120201 section 1 (letter) and https://secure.ssa.gov/apps10/poms.nsf/lnx/0501120200 Section E1. Hope this helps someone in the future. So Brandon was approved for the financial portion.
My Fair Share - Lastly, I added that Brandon will be paying his fair share of household expenses and food. I provided information on the average rental costs in our area for rental of a room or 1/2 of an apartment or house. I also calculated costs for electricity based on information from the electric company about costs per square foot. I also included the average costs for Brandon's food based on receipts I have kept for several months. I calculated the total costs on a form and had Brandon sign a contract stating he will pay his fair share of costs. The SSI worker was surprised I had these documents, but accepted the documents. If approved for the "my fair share" Brandon will receive the full amount of benefits of $674 versus a deduction of 1/3 monetary deduction of in kind support I am providing . This is very important. I did not want to come back and battle the 1/3 amount. Brandon was approved for the full benefit based on the information I provided and the signed form by Brandon. However, the full amount will not kick in until two months after approval (June).
Timeframe - Brandon will begin receiving benefits effective 1/1/11. I applied on 12/10/10 for the medical and was approved for medical on 1/19/11. Then immediately following we completed the financial portion and we just received approval on 3/8/11. One more point. I had to make a few calls to move it through the process with the SSI worker during the review of the trusts. Otherwise they were bugging me to complete the paperwork. Also, because I applied 1 day after Brandon's birthday they counted my income for the first month. I should have waited for the following month to apply.
So I don't think it is necessary to hire an attorney for the SSI process. The SSI pages really walk you through what documents are needed and the process. The key is to identify conditions and those physicians to verify. In Brandon's case they took the information from the school report as their evidence and did not ask for any additional information. The whole process was relatively painless. I will have to begin keeping records of Brandon's expenses monthly so there is accountability and record keeping.
Medicaid Eligibility - Lastly, I was told by a provider that Brandon would briefly lose Medicaid during this transition. In fact I have received 4 letters from Medicaid indicating tht Brandon has lost Medicaid eligibility. However, I talked to HHSC staff and Brandon lost Medicaid under the regular CLASS classification but gained coverage under SSI coverage with the CLASS program included. The problem is that you will not receive a letter indicating that coverage was added for SSI. I just had to take the word of the HHSCstaffer. The are looking at this to see if there is a better process. Also the letters are awful. It is hard to tell what they are saying about termination of benefits, definately not in six grade level reading. I recommend if this happens to you, call to verify coverage did not get dropped.
Brandon and I are going through many transisiton issues right now which I will post at a later date, but it has been a little stressful for the last month. We are working through them and hope to have some decisions soon.
Leah
Power of Attorney. I struggled with whether to do a power of attorney for Brandon or go through guardianship. I still have many people telling me that down the road I may have to consider guardianship. But I also have a power of attorney for my 89 year old mom with dementia and it works very well for medical and financial issues. I discussed both options with our trust attorney who has an adult sibling with disabilities. She helped me decide. Brandon does understand everything you say to him within reason and can write his own signature, although nobody knows what it says. That could be a Rummel trait. The question is would a judge be willing to take away rights from Brandon if he can make some decisions on his own. So I decided that Brandon was able to consent to give me power of attorney rights and we would go with the option for now. If down the road I have to consider guardianship I will go back and consider the options, but for now Brandon has his full rights as an adult, he can vote, date, get married (scary) and make full decisions. I can help him with those decisions when they involve medical and financial.
Because I went with this option Brandon is now his own employer with the CLASS consumer directed program. He had to apply for an employer identification number (Tax ID) and sign many papers. I am his designated representative for purposes of this CDS which he did consent.
Social Security Process - Now for application for SSI. I did have to think about whether I wanted to go forward with this application until Brandon is living independently. I decided to move forward right after Brandon's 18th birthday for several reasons. First, applying between 18-22 allows for an easier rate of approval. If you read the SSI information persons totally disabled since birth have several categories where there is almost automatic approval. After 22, it is harder to prove that the disability has been a lifetime disability. Second, I am starting to think that one day I may want to retire and I need to start thinking about Brandon as any child that will need to provide for himself so at retirement I can provide just for myself. Third, if something happened to me tomorrow no one else will have to go through the process of trying to get Brandon's records together and go through all these processes. He would transition much smoother. Also, for purposes of benefits Brandon will be classified as SSI disabled meeting the income guidelines. So I took one class, had a private consult, talked to many parents and read alot on how to apply. I think the best information was on the SSI website and then the information I got from other parents was great. So here is where I started.
Application for consideration of medical conditions - First, you now apply on line and there is a two step on-line process. This is the link to entering general information and getting the process started. http://www.socialsecurity.gov/applyfordisability/. This will ask for basic information about the person with disabilities. After you complete this step you need to go to the Adult Disability Report. https://secure.ssa.gov/apps6z/radr/radr-fe
This is where you enter all the medical information, the names of the physicians or other providers to contact and some information about how that applies to work. I read through all the SSI info and found several key facts. There is a list of illnesses that with medical proof will qualify a person for benefits. The first list is the compassionate allowances. http://www.socialsecurity.gov/compassionateallowances/ Once a person is diagnosed with one of these illnesses a person automatically qualifies for the medical portion of the decision. If you are working on applying, take a look at the list. If they work for your situation then you want to focus the names of your physicians and other providers to just confirm this illness and really no other paperwork is required.
Severe Medical Conditions - Brandon does not meet the definition of compassionate allowance. So the next category is the listing of medical conditions that are so severe they qualify a person for approval in the medical category. http://www.socialsecurity.gov/disability/professionals/bluebook/listing-impairments.htm I went through all the conditions with several friends (this was though to read through for me and listing all the bad things Brandon has been diagnosed with). My friends were very helpful working with me to go through each category and identifying Brandon's conditions. We quickly discovered that Brandon easily qualified in four categories. He has many others but they are not on the list and not worth spending time listing and identifying the doctors. I concentrated the application on those four conditions. I am not sure my process is the usual process, but I took off a day to complete the application. I finished answering the questions on part 1 which is the general application and started on part two. I needed to look up some providers on part two and stopped for the day to go through the many boxes of records to find a physician's name. However, the next day someone called for Brandon and I realized it was the SSI office. They asked if I could complete part two the next day so I finished part two a little faster than I thought I would. In the meantime, they sent a release form for Brandon to sign and asked for any records to be sent in at the same time. I had been told don't bother sending records, but I decided to send two records. The school's 3 year assessment which was very thorough and a medical record identifying Brandon as having cerebral palsy at 9 months old proving that his condition was diagnosed at birth. I returned the form and the records and the next week received a call asking me questions about how the medical conditions applied to Brandon's ability to work. The SSI worker completed a form with these questions based on our conversation. It came in the mail a few days later and I signed and sent it back. The form has many questions about Brandon's condition and how that would apply to his ability to work. She called back and asked a few other basic questions and said the whole thing had gone to a medical director and I should have a decision in two weeks for the medical portion of the application. However, she hinted that Brandon was approved for the medical portion. Brandon was approved for the medical part of the application at that point.
Financial Consideration - Within a few days I received another call to come in with Brandon's financial records. Brandon and I went to the SSI office to provide the financial documents. They asked for his bank records, information on the trust accounts and information on life insurance benefits. The trust accounts make the determination more complicated. The SSI worker went through Brandon's accounts, Brandon's trust accounts, asked information on my financial information and reviewed the trust documents. Remember Brandon cannot have more than $2000 in assets. The most time consuming process was the review of the trusts. The SSI worker sent both Brandon's child support trust and his family trust to the main SSI office for review by their attorneys. I guess the wording was correct, but in the approval information I was cautioned that when using any of the trust money it must be reported and possibly considered as income if not following the guidelines from Medicaid. Here are the links they referenced. https://secure.ssa.gov/apps10/poms.nsf/lnx/0501120201 section 1 (letter) and https://secure.ssa.gov/apps10/poms.nsf/lnx/0501120200 Section E1. Hope this helps someone in the future. So Brandon was approved for the financial portion.
My Fair Share - Lastly, I added that Brandon will be paying his fair share of household expenses and food. I provided information on the average rental costs in our area for rental of a room or 1/2 of an apartment or house. I also calculated costs for electricity based on information from the electric company about costs per square foot. I also included the average costs for Brandon's food based on receipts I have kept for several months. I calculated the total costs on a form and had Brandon sign a contract stating he will pay his fair share of costs. The SSI worker was surprised I had these documents, but accepted the documents. If approved for the "my fair share" Brandon will receive the full amount of benefits of $674 versus a deduction of 1/3 monetary deduction of in kind support I am providing . This is very important. I did not want to come back and battle the 1/3 amount. Brandon was approved for the full benefit based on the information I provided and the signed form by Brandon. However, the full amount will not kick in until two months after approval (June).
Timeframe - Brandon will begin receiving benefits effective 1/1/11. I applied on 12/10/10 for the medical and was approved for medical on 1/19/11. Then immediately following we completed the financial portion and we just received approval on 3/8/11. One more point. I had to make a few calls to move it through the process with the SSI worker during the review of the trusts. Otherwise they were bugging me to complete the paperwork. Also, because I applied 1 day after Brandon's birthday they counted my income for the first month. I should have waited for the following month to apply.
So I don't think it is necessary to hire an attorney for the SSI process. The SSI pages really walk you through what documents are needed and the process. The key is to identify conditions and those physicians to verify. In Brandon's case they took the information from the school report as their evidence and did not ask for any additional information. The whole process was relatively painless. I will have to begin keeping records of Brandon's expenses monthly so there is accountability and record keeping.
Medicaid Eligibility - Lastly, I was told by a provider that Brandon would briefly lose Medicaid during this transition. In fact I have received 4 letters from Medicaid indicating tht Brandon has lost Medicaid eligibility. However, I talked to HHSC staff and Brandon lost Medicaid under the regular CLASS classification but gained coverage under SSI coverage with the CLASS program included. The problem is that you will not receive a letter indicating that coverage was added for SSI. I just had to take the word of the HHSCstaffer. The are looking at this to see if there is a better process. Also the letters are awful. It is hard to tell what they are saying about termination of benefits, definately not in six grade level reading. I recommend if this happens to you, call to verify coverage did not get dropped.
Brandon and I are going through many transisiton issues right now which I will post at a later date, but it has been a little stressful for the last month. We are working through them and hope to have some decisions soon.
Leah
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