Yes,still driving down that road to recovery. Brandon had another scare at school. This is the second scare in a few weeks and the second scare where Brandon could not breath. It is starting to worry me and I dont get worried that often. This week I had to go to Houston to work. After last week's scare I sent everyone information on how to get in touch with me and all my back-ups. However, wednesday there was not a great deal of coverage. Sure enough, I get a call from Brandon's school that Brandon was complaining of not being able to breath. He looked in distress. His oxygen saturation rates were 78 and his heart rate was high. Having oxygen rates at 78 is bad. When Brandon was young we had orders to call EMS if Brandon oxygen rates fell below 85 and this was below 85. This is also the second time Brandon has appeared to struggle breathing.
I called the doctors office and they wanted EMS to go to the school. When I called back to the school and after Brandon breathing treatment was complete his rates had gone up to 88. Most of us walk around with oxygen rates between 98-100. So 88 is not that great either. The nurses at the school said they were not hearing oxygen moving in the lower lobes of the lungs. I finally got ahold of my brother and he agreed to go get Brandon and take him to the doctor who was willing to see him.
So once again Brandon still has pneumonia even through he has completed his medicine. We switched him to another antibiotic. We are going on three weeks of lung problems and I hope this antibiotic clears up Brandon's lungs.
No special olympics track tomorrow for Brandon. Brandon really likes track the best. However, Brandon is very excited to be able to watch the Royal Wedding tomorrow. You know it is in "England" where the "Beatles" started their career. Brandon may show up in my bedroom tomorrow morning at 5:00 am and turn on the TV to the royal wedding while he is going around the house turning on all the TVs.
I just hope he clears up soon so I can stop worrying.
More later
Leah
Thursday, April 28, 2011
Friday, April 22, 2011
The Road to Recovery
Brandon and I have been a little under the weather the last two weeks. At first I thought it was allergies with all those great tree pollens with the trees in full bloom and the wind blowing more than usual. But by the end of last week I realized it could be some kind of illness. I thought we had recovered by Sunday last week. I sent Brandon to school on Monday and I went off to my usual meetings. I was in a meeting Monday afternoon when my phone started ringing over and over. I finally realized this and saw it was the school. I called them back to find out Brandon was in the nurses office with 104.7 temperature. I have no idea what happened from 8:00 am to 3:30, but is was a downhill spiral. I rushed to the school finding Brandon fairly lifeless. I called Brandon's PCP and they said bring Brandon directly there. We rushed to their office. That reminds me - I HATE AUSTIN TRAFFIC. This all took over an hour. By the time I made it to her office, Brandon's temp went down to 103. I was very worried that he would have a major seizure while I was driving him around. We got to the office and Brandon looked much better. After several tests and xrays we determined that Brandon had pneumonia. Man, I was so off on thinking he was fine when he went to school. So we started aggressive breathing treatments and antibiotics. The next day I started to feel bad and I went to the doctor and received the same medicine. So it has been a long week with Brandon and me recovering at the house. He is much, much better now and will probably be ready for school Monday.
Monday, I close on the new condo where Brandon and I will be moving. It has been a complicated closing with setbacks every few days. We have one more hurdle to overcome before closing on Monday. If all goes well, we will be the proud owners of a condo in the Eanes school district. We will spend the next few months updating the condo and move in this summer. It will be nice to not have to worry about a yard for a while, be able to walk the trails around Zilker from the condo, swim in the pool and have much less to clean, but I will miss the country. Brandon will be fine wherever he lives as long as he has his crucial items - the Internet, the Beatles music, the TV (he kind of has a little crush on Selena Gomez), goldfish (the snack) and pediasure. Oh - and his mom. The only scary part of the move for me, are all the back-ups I have established where we live currently. If I need to work early or stay late I have people lined up to help. I won't have that support network in town and will need to establish it. But that is part of a mom's job is the challenge of scheduling on a daily basis. We will get through this.
So we are on the road the recovery. Recovery from our illness and moving to the next chapter of our life as Brandon graduates and moves into learning about life in the working world. We are ready for the move and ready for the challenge. Wish us luck.
More later
Leah
Monday, I close on the new condo where Brandon and I will be moving. It has been a complicated closing with setbacks every few days. We have one more hurdle to overcome before closing on Monday. If all goes well, we will be the proud owners of a condo in the Eanes school district. We will spend the next few months updating the condo and move in this summer. It will be nice to not have to worry about a yard for a while, be able to walk the trails around Zilker from the condo, swim in the pool and have much less to clean, but I will miss the country. Brandon will be fine wherever he lives as long as he has his crucial items - the Internet, the Beatles music, the TV (he kind of has a little crush on Selena Gomez), goldfish (the snack) and pediasure. Oh - and his mom. The only scary part of the move for me, are all the back-ups I have established where we live currently. If I need to work early or stay late I have people lined up to help. I won't have that support network in town and will need to establish it. But that is part of a mom's job is the challenge of scheduling on a daily basis. We will get through this.
So we are on the road the recovery. Recovery from our illness and moving to the next chapter of our life as Brandon graduates and moves into learning about life in the working world. We are ready for the move and ready for the challenge. Wish us luck.
More later
Leah
Thursday, March 24, 2011
I Feel Some Changes Coming On
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
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
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
Saturday, February 26, 2011
Best Special Olympics Ever
I love Special Olympics because Brandon loves Special Olympics. But I also love that Brandon gets exercise and socialization, two things he does not get enough of. Today was another Special Olympics event. Special Olympics is run mainly by volunteers. For the parents it can be a little frustrating because often the events run very far behind, the weather can be unpredictable, and sometimes they are very unorganized. As a former manager that drives me crazy. Last year Brandon's track meet lasted for 6 hours and he only had two events. But like most parents, I cant complain because again - Brandon loves this.
I have to give credit today to HEB, Special Olympics staff and the coaches. Brandon was told to be at the event at 10:45. There was a wreck on the way to the event and we were a little late. To my surprise they were running ahead. So we walked into the event. Within 5 minutes Brandon was doing his three events and we were out of the gym within 30 minutes. Plenty of time for the outlet mall.
Brandon earned a gold medal (he was the only one in his category but don't tell him). I was real happy that it was a short 30 minutes, very organized, and the HEB volunteers made all the athlete's feel great. And the best - Brandon was very happy. You know he loves Special Olympics. So really a great day.
On to track.
Later Leah
Sunday, February 6, 2011
Single Mom and Small Family
I have to say sometimes it really sucks to be a single mom from a small family. Today and many other days like today can be challenging. Last night Brandon started having some sniffles and a little chest congestion. I tried to think it was just allergies, but I finally relented and took Brandon's temperature and sure enough it is a full blown cold. Not a horrible one, just bad enough that he should not go to school and he needs someone pumping medicine down him to make sure he does not get worse. For 18 years I have been juggling those times when Brandon is sick, trying to find someone to care for him while I still work, and making sure that person knows how to care for Brandon. It is really a challenge. Most kids at 18 can stay home by themselves but when Brandon is sick it is even more important to have someone stay with him.
This week at work is the worst with the legislative session active, executives coming into town and lots of meetings I set up. So there is no way for me to take off work. I started calling everyone that could possibly take care of him at least for some part of the day or 1 day. My brother had to go to work, some people could do some of the day, but there were gaps. I was starting to panic.
This brought back memories of a day a many years ago when I had a "gig" on a Saturday night at a place by the lake. Yes, I was originally a musician who for a while tried to live off musician wages. Brandon was little - around 4. I didn't have anyone to stay with him that day and I called everyone I could think of. In the end, I brought Brandon to the gig and he sat on my foot pedal for most of the gig until someone in the audience I knew convinced him to sit with him. It was a very stressful night.
So back to today - I called a friend of mine that lives near here and she came up with a retired teacher that lives nearby. However, we could not find her number. She drove over to her house and now I have her coming over tomorrow to stay with Brandon. I really owe one to my friend for going the extra mile.
I know it is still challenging with a husband and siblings, nieces and nephews, but it is times like these that I wished I was from a large family. I am not ever sure if Brandon can be left alone for long periods of time, so as Brandon finishes school and has more time at home this will become even a larger issue.
I am probably feeling even more stressed than usual because at the same time I am trying to find care for my son, my 89 yr old mom moved into the Alzheimer's unit in assistant living. My brother and I have been spending alot of time hoping this transition will work. Her memory has really diminished and it was a tough decision to move her. Jim and I are a little worn out right now. She became sick about 2 months ago, went to the hospital from her assistant living facility, then to skilled nursing. At that point she did not remember the assistant living apartment and our options were not great.
I am blessed to have a large network of friends that support Brandon and me. Thanks to all of you who worked through this with me today. Now, just hope Brandon is well by Tuesday.
Leah
This week at work is the worst with the legislative session active, executives coming into town and lots of meetings I set up. So there is no way for me to take off work. I started calling everyone that could possibly take care of him at least for some part of the day or 1 day. My brother had to go to work, some people could do some of the day, but there were gaps. I was starting to panic.
This brought back memories of a day a many years ago when I had a "gig" on a Saturday night at a place by the lake. Yes, I was originally a musician who for a while tried to live off musician wages. Brandon was little - around 4. I didn't have anyone to stay with him that day and I called everyone I could think of. In the end, I brought Brandon to the gig and he sat on my foot pedal for most of the gig until someone in the audience I knew convinced him to sit with him. It was a very stressful night.
So back to today - I called a friend of mine that lives near here and she came up with a retired teacher that lives nearby. However, we could not find her number. She drove over to her house and now I have her coming over tomorrow to stay with Brandon. I really owe one to my friend for going the extra mile.
I know it is still challenging with a husband and siblings, nieces and nephews, but it is times like these that I wished I was from a large family. I am not ever sure if Brandon can be left alone for long periods of time, so as Brandon finishes school and has more time at home this will become even a larger issue.
I am probably feeling even more stressed than usual because at the same time I am trying to find care for my son, my 89 yr old mom moved into the Alzheimer's unit in assistant living. My brother and I have been spending alot of time hoping this transition will work. Her memory has really diminished and it was a tough decision to move her. Jim and I are a little worn out right now. She became sick about 2 months ago, went to the hospital from her assistant living facility, then to skilled nursing. At that point she did not remember the assistant living apartment and our options were not great.
I am blessed to have a large network of friends that support Brandon and me. Thanks to all of you who worked through this with me today. Now, just hope Brandon is well by Tuesday.
Leah
Thursday, December 30, 2010
A little step towards independence
My clean guest bedroom downstairs
This Christmas holiday Brandon and I agreed that he was going to begin becoming more independent. We agreed that Brandon would move into the bedroom upstairs and I would turn the bedroom downstairs into a guest bedroom.
I built this house over 13 years ago when Brandon was very ill and still had night nursing and was connected to many machines every night. I purposely built the downstairs so Brandon and I could live downstairs with some privacy and built the upstairs so someone could live upstairs and help with Brandon's care, but both would have their private areas. The upstairs has a bedroom, bathroom, small office and a workroom/playroom. I think it a little over 700 Sq feet. I also had insulation placed around the entire upstairs area so it would be more quiet. At the time I wasn't sure if I would need someone to live with me to help with Brandon's care. The space has actually been a lifesaver.
Somewhere in the middle of this, I decided to home school Brandon and turned the workshop upstairs into Brandon's home school. We had several teachers and many UT students coming in and out all day long. There were two computers upstairs - a Mac and a Dell computer. Lots of devices being tested to determine what was the best way Brandon learns. Once Brandon started school again we kept the upstairs as Brandon's computer center and learning area.
Before Christmas, Brandon and I decided that the upstairs is actually similar to an apartment and Brandon could live more independently upstairs. The goal is for Brandon to sleep in his bed all night, wake up to his own alarm, pick out his clothes independently, deal with his own laundry and have his own "guy" space.
I didn't realize what a project this would be for the Christmas holidays. First we had to go through everything in Brandon's room. We cleared out 5 bags of clothes, toys that are too young, books and even furniture. We moved all of Brandon's furniture out and the room was a teenager mess. Brandon's aide Ross and I cleaned the room, painted, moved furniture all Christmas holiday to assure Brandon's room was usable and the guest room was clean and ready for guests. Brandon's room was previously painted like the Yellow Submarine on the walls (yellow) and Lucy in the Sky with Diamonds on the ceiling (navy blue with stars and the moon). We painted it a dark tan with a cream ceiling. Drastic difference (see above).
I really was looking forward to the move to have a little "Leah" time, but I have quickly found out that this is as much for me working through this transition as it is with Brandon. It became clear very quickly how much I do for Brandon that really he can do for himself. I always tell the aides that work with him "everything you do for Brandon is one less thing he can do for himself". But now I have to face that I may be the worst offender. I pick out Brandon's clothes, wake him up, get his medicine, wash his clothes and fix his food. Brandon probably can do most of this with some nudging.
I am also "in tune" to Brandon's sounds and watch for Brandon's seizures. I wont be able to monitor as well as I do now. So I have searched the web for a few things to help me with the transition and to still assure some safety. First the upstairs is deeply carpeted on purpose to help in the event Brandon falls. I did that a while back. But Brandon is a little messy and I did not want to ruin the carpet too quickly, so for his new room I ordered a rug and water proof padding to protect the carpet below. I also found a great monitor that has a two way radio (like when Brandon turns on the TV at 4 am). ( http://www.amazon.com/gp/product/B002UDGVZS/ref=oss_product) It is also a video monitor and sound monitor so at night I can listen for any strange sounds. I also found a simple reminder system that allows us to program up to six reminders. (http://www.amazon.com/gp/product/B001DTYJ04/ref=oss_product) If this works I can get something more complex, but I want to program in this device times to wake up, time to go to bed, time for medicine, time for a bath, time to pick out your clothes for the next day. That's a great start.
So we will see how we both transition through the next nine months as Brandon prepares for his 19+ program that will help Brandon learn the skills and work with him to find a job. All baby steps for now, but important steps for the future. I have a feeling Brandon may transition better than me.
More later.
Leah
Brandon's new room. Its all about the Beatles and Elvis.
Subscribe to:
Posts (Atom)