Looking into the Future

I have really been dreading writing about this topic. But for you other single parents out there that have kids with special needs and a child support order this may help you in the future.  Also, forgive me because I had to get a little technical. 

In my last year of Brandon's transition I have really had to deal with a nagging issue that I have not wanted to tackle now or ever.  Will Brandon need lifelong supports and can Brandon live independently and off of his own income.  Although, I am not sure any parent can answer that question at Brandon's age.  I see friends with adult kids living at home and know they are probably asking the same question.  But in Brandon's case this is more of a lifetime question.  Once you come to terms with the answers, then comes the question of what will happen if I am no longer here to help care for him whether he is living with me or living independently.  Therefore, I have been thinking about all possible funding sources for Brandon in the future to assure Brandon can live as independently as possible and achieve his "good life".  When Brandon turns 18 he will apply for SSI disability benefits.  This will generate $674.00 per month for him to live on.   In addition, Brandon's goal is to work and earn money and as long as he is working SSI gets adjusted accordingly.  SSI is extremely complicated, especially if you have a job.  By the time Brandon begins receiving SSI, I will be an expert - but don't tell anyone.  I will blog on SSI because that is the next thing I will be working on until Brandon's 18th birthday.  I finally decided to hire a little help with the process and it will be well worth it.

Brandon also receives $450 per month in child support.  When Brandon turns 18, the $450 is deducted from the $674.00 in SSI payments and Brandon will therefore still only receive $674.00 - $225.00 in SSI payments and $450 in child support. 

After talking to our Trust lawyer, she suggested to maximize payments and have Brandon's child support paid to a new trust specific for just child support payments.  These payments are made directly for the care of Brandon and are subject to state estate recovery law in the event of Brandon's death.  Any funds not used in the trust for the care of Brandon will be repaid back to the state.  This is a special needs trust which allows Brandon to receive the funds in addition to any SSI.  It also has very strict requirements on what the funds can be used to pay for such as welfare, safety, education and comfort, but cannot pay for anything that would otherwise be paid by a government source or insurance coverage, like medical care.  So with the new trust Brandon would receive $674 plus the child support amount currently $450.  As the trust begins receiving money, any withdrawals will require the trustee to account for the funds and assure that the funds meet the trust requirements. 

There is one catch - the child support order must be modified to pay the trust and not me.  I was told this would be very easy and I could just request the change from the AG's office.  I am always concerned when someone tells me something is really easy and in this case it has been anything but easy.  However, I dedicated this year to getting everything set up for Brandon to transition and to allow him to be independent.  This is just one of those on the list.  Remember, first I had to have an attorney set up the trust.  Then I had to get a federal Tax ID for the trust.  Then we had to fund and set up the trust at the bank.  I started this in March of 2010. 

I contacted the AG's office and inquired on how to change the payee from me to the trust.  The person at the local AG's office said just to fill out a change of bank account for direct deposit and that would be all I needed.  That didn't sound right.  I went back to the trust attorney who said that the order had to be modified specifying the name change.  The local AG's office really was not any help so a lawyer friend called the AG's office to try to help us.  The AG's office she contacted knew exactly what was needed, drafted an order, sent the paperwork to me for review, asked for the bank records and I thought that was all we would need.  However, in the process they found out that my ex owed back child support and they insisted that we go before a judge to address both issues.  I shortly received a subpoena.  UGHH.  I showed up for court in August thinking this should be easy.  After 6 hours of waiting (jail cases first, paternity DNA cases second, one spouse didn't show up third) the AG's attorney called us.  He immediately started going over the usual things you discuss in these matters.  Because my ex is currently not employed he lowered the child support to $250.  The AG attorney did not know that Brandon was disabled and I was there to change the payee.  He became extremely distraught when I told him the only reason we were there was to change the payee.  He did not have any of the records from our previous AG discussions, no copy of the order and no trust information.  He refused to make the change without the other party there, i.e. the trust.  I explained to him that I am the the other party because I am the trustee of the trust. The guy was so flustered that he wrote a bunch of information trying to address the payee into the order but refused to change the payee to the trust.  I told him I needed to run what he had thought up and written in the order past the trust attorney.  Therefore, we left with a temporary order and a new court date.  I checked with the trust attorney who said the changes would probably work.  So today we went back to court for another 6 hours to make the temporary order final.  After the agreement becomes permanent then I will need to file a new change in bank account.  I know in the long run I will be happy I devoted about 1 week of this year to this issue but right now it is just one more thing on the list of many things and really it was exhausting.  I hope none of you mom's have to go through the same thing, but I wanted to do this without hiring another attorney for the year and it seemed fairly simple. 

On to SSI and power of attorney and lots of margaritas. 

More later.
Leah

Brandon's video from Internship with the Coalition of Texans with Disabilities

The Coalition of Texans with Disabilities sent out a newsletter today stating "Anywhere, any day:
Rock out with CTD! To commemorate the 20th anniversary of the ADA, CTD's summer intern, Brandon Rummel, created this rock video! Set to Bob Seger's "Feel Like a Number" and the Beatles' "Birthday," the video pans through 20 years of CTD photos. Click here to check out Brandon's fine work!" 

During Brandon's internship at CTD Brandon worked on a video celebrating the 20th anniversary of the ADA for CTD.  The link will take you to Brandon's rockin' video.  Great job Brandon and CTD.  I love the video.  http://www.youtube.com/watch?v=3QkomtfW7lE
Leah

Texas Children's Hopsital Rocks Once Again

Over the years I have taken Brandon to Texas Children's Hospital for various treatments, mainly because the services have not been available in Austin or the expertise is so much more in Houston.  Brandon saw his first pulmonologist in Houston when there was no pulmonologist in Austin.  I truly believe the pulmonologist in Houston saved Brandon's life after a series of life threatening pneumonia's and long hospital stays when he was very young.  The Houston pulmonologist simply developed a plan for Brandon to begin to clear his scarred lungs and to begin to recover from several years of infections.  The treatment and medication was simple once implemented and Brandon has not been hospitalized from pneumonia (except the H1N1) since around 5.  I also took Brandon to Texas Children's to have them develop a plan to help Brandon eat foods through the mouth safely and to improve his swallow.  I video taped the sessions, brought them back for the school, the therapists and the doctors that treat him here.  At age 4-5 Brandon did not eat anything through his mouth and today Brandon takes 100% of food and medication though the mouth, except when he is ill.  I also discussed having a surgery to reduce the amount of saliva, but ultimately decided the risks were too great.  The surgeon in Houston does 100's a year and the surgeon in Austin did about 2 a year.  It really makes a difference. 

I have not been back with Brandon in a while to Texas Children's mainly because of all the visits to Scottish Rite.  Originally, I had planned on having Brandon's surgery for his foot at Texas Children's but the doctor we were scheduled to see ended up taking a temporary position out of the country for 6 months and we decided to go with Scottish Rite. 

Today I remembered why I love going there so much.  Brandon went to the Genetic Clinic within their specialty care center.  The physicians there are associated with the Baylor College of Medicine.  I wanted to specifically see Dr. Bacino (http://www.bcm.edu/genetics/index.cfm?pmid=10580).  Brandon had some tests done previously and they had all the tests from other clinics already at the office.  The visit was to go over all the previous tests, discuss Brandon's condition and determine if we missed anything, needed to repeat anything and if there is nothing else at this time.  Dr. Bacino agreed that Brandon's condition really does not appear to be cerebral palsy and that we have probably not found his diagnosis. 


We decided to go to the next round of tests.  He also videotapes each patient for physician discussions they have each day.  All the physicians will review the tests, Brandon on video to see if they have any other tests they believe should be performed.  He also told us to not give up on him (Dr Bacino) that this was the first series and he wants to run a few others.  Really nice guy and great team with him.  I really believe when we get done with all of the tests we will either find a diagnosis or I can at least feel like I tried my best. 


Only one bad moment for the day.  They wanted a urine sample and Brandon has never been able to give one at a facility.  What I feared was, we would be there all day waiting.  Sure enough we were.  I finally asked if we could get the orders for the urine tests and take them back to Austin.  They agreed.  The appointment was at 9:30 and we left at 3:00.  But I was so relieved that someone is really trying to help that I didn't care.  Brandon was soo relieved we were not going to stay there any longer. 


I really wanted to try to do this analysis before Brandon turns 18, because after 18 Brandon is considered an adult.  The adult physician world is not as great as the pediatric world.  I am not even sure who will be his primary physician and I will probably be traveling out of town more often because very few specialists in Austin take kids transitioning with special needs.  A few of Brandon's physicians have agreed to continue to treat Brandon, but most will not longer treat him after 18.  Even Dell Children's has an age limit of 16.  However, if you show up at the ER they will not turn you away.  Anyway, I just wanted to let everyone know how it went but to support physicians doing it the right way for kids.  Tests should be back in a few weeks and then we go back to review and determine if more are needed.  More later.


Leah

Success on the Job

Brandon, Ross (Brandon's aide) and staff at The Coalition of Texans with Disabilities

Brandon's has completed his 5 weeks working through the Goodwill Training Program and his assignment to the Coalition of Texans with Disabilities.  If you read previous posts the first day was a little rough.  Brandon had to understand the concept of work and how important it will be in the future.  Brandon could not have a better assignment for his first job.  He had very supportive staff who understand his special needs, the difficulty of a first job and the needed encouragement to show Brandon he really can succeed.  Brandon's main project while he was working was to produce a video about the 20th anniversary of the ADA.  A great learning topic for Brandon.  Brandon had to learn to scan pictures, find music for the video (that was easy), type information into his communication device, type e-mails, present his progress at staff meetings, type interview questions for people he interviewed into his device, interview people and produce the video.  The great thing he learned is that people have a hard time understanding him when he talks and it is really important to use his device even though he doesn't like using it.  That will be very important for the future. 

Brandon worked 5 weeks.  For him that was a lifetime, but he really began to enjoy going to work.  He earned $7.25 per hour and a bonus for working on some career projects for Goodwill.  We received information two days before the program ended that Brandon could continue through September with Goodwill, but he already had plans for the rest of the summer and I decided 5 weeks was a good start of a working future for him.  I asked Brandon what was the reason for success in this job and he said work hard.  Brandon also learned a great deal of independence in this job that hopefully will continue in his next experiences.  We will definitely do the Goodwill training next year after he graduates from High School and moves into the 19+ program.  Just a little baby step to independence. 

More medical updates -
During the process of determining treatment for Brandon's cavernous foot at Scottish Rite, the physicians at the hospital believed that Brandon's medical diagnosis of cerebral palsy was not correct.  We had many, many tests for almost two years trying to determine a cause of the condition.  At the end of the tests performed at Scottish Rite they referred us for genetic testing at Baylor in Dallas.  We began testing in Dallas and continued testing in Austin with genetic testing and biochemical genetic testing.  Some of the tests came back positive or inconclusive.  A diagnosis of cerebral palsy indicates a "static condition" that does not get worse.  Once the onset of cerebral after the event causing cerebral palsy the condition does not get worse.  But the physician's at Scottish Rite believe the foot condition is related to a progressive condition and will get worse, including multiple surgeries on both feet to allow Brandon to walk.  I stopped pursuing a diagnosis after Brandon's second surgery and his bout with H1N1.  We just did not have the time to devote to the testing and the research involved in many of these conditions.  Most conditions that have been indicated are very rare and have resulted in many hours of research and e-mails and list serves.  It can be exhausting.  One of Brandon's abnormalities is a genetic deletion of a series of genes called 7q.36.3.  Believe me, I never knew there was so much information on such a rare defect.  There is actually a researcher in Canada that does nothing but research 7q genes.  Each unique condition usually has some kind of research in some area of the world.  If you are into this kind of thing it is pretty fascinating.  Anyway, I finally decided that before Brandon turns 18 I wanted to complete the testing on Brandon to determine if there is a known diagnosis at this point.  I am very aware that there may not be a diagnosis and his condition may remain unknown and still titled "cerebral palsy", but I have to say that I tried.  So next week we travel to Houston to the Genetic Clinic at Texas Children's to have them review all the records, run any additional tests and try to finalize everything that is known at this time.  The clinic is very advanced and is known for their latest research. 

More news -
Brandon has a new puppy "Dizzy Ms Lizzy".  She is a chocolate lab, very sweet, a people person and is 7 weeks old.  In fact he is lying right on top of my feet as I tyoe this post.  I will post a picture of them soon.  Brandon has some medical issues (nothing too serious) right now so he is laying low this weekend to recover before he begins his camp next week.  Lizzy slept on Brandon's lap on the way home from Waco where we picked him up from Peggy (Patrick's mom).  Thanks Peggy for making this happen. 

Also, on the last note of concern - Patrick, Brandon's brother just heard he will be deployed to Afghanistan early Sept.  Brandon is of course very concerned.  However, we are all very proud of Patrick and his service to this country.  He can look forward to many care packages from us in the future.  I found out how to send and already have some volunteers to help gather items.

More later.
Leah

Brandon's first paycheck

He's Growing Up

The last few weeks have been full of a glimpse into the future for both me and Brandon.  I am not sure who has been more surprised.  Me at seeing Brandon grow just a little more into an adult and in some ways loving it, but in other ways wanting to protect him from the world; or Brandon learning a little about life in the future.  Brandon started his job with Goodwill this week.  Last week was spent preparing paperwork, meeting with Goodwill and preparing Brandon for work.  I have learned over the years that Brandon's perception of events are often not what he has expected even if I try to explain prior to the event.  This was no exception.  Brandon went to Goodwill on Monday for training.  This is really a fabulous program focused on transition from high school to work for kids with special needs and kids at risk.  They help develop job skills for the future.  This year Goodwill received funding for this summer training program. I really cant say enough good things about the program and it is a fabulous opportunity for Brandon.  Brandon did well at training but may been a little overwhelmed at all the other kids in the program.  Ross his aide went with him.  For any of you parents reading this you may want to consider this program in the future. 

Brandon was assigned to The Coalition of Texans with Disabilities.  Complete coincidence where he was assigned and a surprise to my friend Dennis, ED of the Coalition and me.  However, Brandon could not have been assigned to a better place.  The first day was really rough.  Brandon had figured out that if he refused to work he would get fired and then he could just stay home and be on the computer all day.  Brandon just refused to work.  It was a tough day for everyone.  That night I decided to talk to Brandon about jobs and the future.  Of course I thought I had already covered most of this, but it is all how you explain things with Brandon.  Brandon and I talked about the future and that either you work or you are in school.  Those are really the two options.  I think Brandon was shocked that he will work for a very long time and no one had really told him that.  The other thing we talked about was the simple thought about work.  "Work hard" and "everyone is happy".  For some reason that stuck with Brandon and the rest of the week went much better.  Brandon has been walking around the house saying "Work hard, be happy".  Whatever works.  This week I also completed Brandon's new trust accounts and had to work with the bank to set them up.  So while I spent time at the bank I brought Brandon with me to set up his first bank account.  This was a little scary for both of us, but Brandon was very excited to see his name on a bank card and to learn that he will make almost $600 which he will put into his bank account and be able to spend some of it on DVDs.  As part of his job this week he went to the Capitol to learn a little about advocating for people with disabilities.  He couldn't stop talking about the Capitol.  A possible future lobbyist.  So a good week for Brandon's first job experience.  More later.  Leah

We've been busy

It has been a busy few months for Brandon and me.  At the first of the year Brandon started his personal network of friends.  I think I have blogged about this previously.  But the main reason for developing a personal network for Brandon is to have more than me having the knowledge about everything Brandon, having a great group of people help brainstorm ideas to support Brandon's great life and a support network to find resources for the future.  I have probably stated why we wanted to start a network for Brandon better in previous blogs.  Since our January meeting a smaller group has formed.  We have met twice and will meet again in June. Our main focus is on the good life plan Brandon developed in Jan. with the larger group.  The group worked with Brandon's main goal of wanting to be the King of Rock n Roll.  Not an easy task, but one we are all taking very seriously.  Since Jan., the group has helped Brandon discover the Goodwill summer job training program, found Brandon a Rock n Roll camp, helped re craft his special needs trust, helped with a modified child support order and a new trust, found a set of drums, sent exercises to help with Brandon's fine and gross motor issues, helped work through choosing guardianship or power of attorney after Brandon turns 18 and started the application for SSI for when Brandon turns 18.  I also have found through the group some great transition trainings, webinars and connections in the community.  Brandon is also starting to socialize with a friend network.  Brandon has developed his own Beatles Blog, emailing some friends and starting to deal with his own laundry and his room.  We are also planning a plane trip to see Brandon's brother Patrick in August.  The network has really been helpful already and having the plan developed has made it much easier. 

I few updates.  Brandon was selected for the Goodwill Summer Work Program and will be working with Dennis Borel at the Coalition of Texans with Disabilities.  Dennis and I are friends, but this placement was completely random.  This will be Brandon's first job and he and I are very excited.  I am excited because I think this will be a great positive first job for him.  He is excited because he will earn $7.25 per hour and can buy lots of CDs and DVDs. 

Also I found through the network the VSA Teen Apprenticeships in Arts and Drama Summer Program.  Brandon has done this program before and it is really great.  It is through VSA Arts of Texas (http://www.vsatx.org/ ) and he really loved it. 

Normally I would not put this detailed of personal information on the web but I wanted to share with other families trying to find resources for their kids. 

Lastly some medical news.  Brandon and I went to Dallas to Scottish Rite this week to check his foot.  Everyone believes the foot operated on is doing great and the other foot does not need surgery at this time.  Great news for us.  Scottish Rite does want to follow Brandon's scoliosis further and took several x-rays before we left.  We will not need to return for at least 6 more months.  Great news. 

Next week Brandon will go to the University of Houston for a final vision assessment for the DARS vision services.  This will determine if Brandon will meet the Texas definition of blind and receive transition services through the vision section at DARS.  Think good thoughts.  The program is really good. 

Lastly some bad news, after my last blog Brandon had a seizure and became disoriented at school.  He also had an extreme headache and was off balance.  It continued most of the day and out of precaution we decided to have Brandon checked at Dell Children's Hospital.  For those of you who are fortunate enough to never had to go to the Children's ER, this means at least 6 hours in the hospital (minimum).  It took 1 1/2 hours to get there and it was almost 6 hours before we left.  Brandon appeared to have developed a bad migraine.  He was given several medication to get rid of the migraine.  Once the migraine was gone Brandon's balance came back.  It was a little scary because it looked similar to a stroke.  All is well now and we are back to non-stop Beatles.  I knew Brandon was really sick because he didn't listen to any music or talk the whole day.  Unusual for him.

More later
Leah