Help fight Seaworld’s disability discrimination

After I sent the last post, I sent out some emails to the San Diego newspapers letting them know we

Fighting for Seaworld Companion Passes

SeaWorld canceled the Companion Pass Program in 2014. Our adults can no longer take an aide of their

SSI Redetermination Appointment 15 minutes

We had our fourth Redetermination  appointment, this time in the SSI offices 1333 Front Street, dow

 

Help fight Seaworld’s disability discrimination

November 20, 2014 in Day to Day Life, Everyday with Special needs by Judy Melville

Clint at Seaworld 2014

After I sent the last post, I sent out some emails to the San Diego newspapers letting them know we parents of special needs children were upset about Seaworld’s recent rejection of a long standing policy of allowing our kids to have a pass allowing them to bring a support companion with them.

The next day I got a phone call from Lori Weisberg at the San Diego Union Tribune.  I explained to her the problems we’ve all been having.  I got her in contact with the other folks who written about in the article Parents of disabled upset with Seaworld  (click here to read article) hat appeared on the front page of the Union Tribune on October 29, 2014.  Make a comment and/or “Like” (just hover your curser over the thumbs up and click on it) a few of the comments that are posted.

With this article the ball is now rolling.  Too make a statement to Sea World and show our displeasure we need to take more action.  We live in a world where Social Media is king.  It influences corporations and politicians.

Our next step is to use Facebook.  I have not been a huge Facebook person, there’s power there if we all do our part. With the assistance of Patrick’s sister, we have a Facebook group called Fight Seaworld’s Disability Discrimination .  (click on title to see the Facebook page) If you are a Facebook friend, please click on the above link and LIKE it. Then you can follow the group, make comments, even post pictures of your own kids at Seaworld with or without their support staff.  If you are a Facebook user you could share the link to the group or post it in your timeline so all your friends can learn about and support the cause. I’m afraid it may be our best hope of making an impression upon Seaworld.  They have employees who search for their name in social media.

 

We can make a difference.  Please help right now!

Fighting for Seaworld Companion Passes

October 26, 2014 in Day to Day Life, Everyday with Special Needs by Judy Melville

Seaworld-logo

SeaWorld canceled the Companion Pass Program in 2014. Our adults can no longer take an aide of their choice into the park. SeaWorld offered a one day half price pass in return. Many of our adults have been weekly (or even more frequent) visitors to the park. How many passes would you need to purchase for your support people in order to keep your adult on his routine, one that he or she has been doing for years? Some of us feel the rejection of our adult’s support staff violates their Title III of the ADA rights to equal access to SeaWorld.

Some families are filing claims with the Department of Justice, advising them that our special needs adults’ ADA rights have been violated by SeaWorld.  It’s quite easy, and you can do it via email. Here is the link for the complaint filing:  http://www.ada.gov/filing_complaint.htm. I’m attaching my emailed Complaint below.

In order to file a claim on behalf of your adult, you need to have your rights refused by SeaWorld.  Note that I AM NOT AN ATTORNEY.  I’m sharing with you what I did on Patrick’s behalf.  I sent an email to Guest Services inquiring about the change of policy. Also, Patrick’s sister took him to renew his pass and spoke with someone at Guess Services there, asking them to honor his right to equal access to SeaWorld, which they did not.

The more complaints the Department of Justice receives, the better. If we come out in force hopefully the DOJ will respond. If you are feeling that your special needs adult’s rights have been rejected, please join me in filing a complaint.

You can also contact Megan at Disability Rights (619-239-7861).  She is very helpful and guided me through this situation.

I attached copies of the emails I received from Seaworld about renewing Patrick’s companion pass.  seaworld-email-2 seaworld-email

 

Judith L Melville
Step-Mother and Conservator of Patrick Melville
Address
San Diego, CA 92107
phone number
Judy.sunsetcliffs@gmail.com

October 23, 2014

US Department of Justice
950 Pennsylvania Avenue, NW
Civil Rights Division
Disability Rights Section – 1425 NYAV
Washington, D.C. 20530
To Whom It May Concern:
I am filing a civil rights complaint against Sea World San Diego on behalf of my son, Patrick Melville. On March 14, 2014 I sent an email to SeaWorld’s Guest relations inquiring about renewing my son’s companion pass. That same day I received an email from Elsa of the Guest Correspondence Team advising us that “guests will no longer be able to renew or purchase a pass with escort privileges.” Instead she offered “a disabled guest and one companion are eligible to receive a 50% discount on single-day admission.”

My son’s companion pass expired in April 2014. Because he could not bring an aid with him into the park without purchasing another ticket or Season pass, Patrick had to wait until August 2014 to visit the park when his sister, who has a pass of her own, was home from college. We purchased a Premium pass for Patrick from Costco. His sister, Samantha Melville, took him to activate it and spoke to Briana at SeaWorld’s Guest Services regarding renewal of Patrick’s annual escort pass, an accommodation that has been in place for many years for people with disabilities who cannot attend Sea World independently because of their disability. This reasonable accommodation was denied by the Guest Services representative. People with disabilities in need of attendant services and/or protective supervision are now required to pay more to attend Sea World because of their disability.

I have attached my original email to Sea World.

Thank you. I look forward to your intervention in this important matter of access to community recreation and leisure for people with disabilities.
Judith L. Melville
Step Mother and Conservator of Patrick Melville

SSI Redetermination Appointment 15 minutes

October 16, 2014 in SSI by Judy Melville

ssi-logo0We had our fourth Redetermination  appointment, this time in the SSI offices 1333 Front Street, downtown San Diego. It went exceedingly well.  I wanted to share it with you.

We received a letter in October 1, 2014 telling us we had an appointment 8 days later, in the afternoon.  It turned out the date and time worked for us so I kept the appointment. We had an phone appointment in 2013 that also went well.  I wasn’t nervous until I remembered that SSI did not know Patrick  hadn’t worked  for Tender Greens for 3 months.   They might not be happy about being kept out of loop.  What the heck I’ve been sending them paychecks for 2 years and they’ve been sending me uber mail.  I decided I’d bring the whole 10inch thick file with me.

The back of the appointment notice requested we bring with us, Bank statement: savings and checking accounts and any other bank statements, pension records from VA and various other government agencies, Pay stubs from work or self employed tax returns and lastly life insurance policies and/or burial contracts.

I remembered from our last appointment they asked for our rental contract that establishes Patrick pays us x amount of dollars a month for room and board.  I printed a new contract, Patrick, his Dad and I signed it.

The only income Patrick has that’s not immediately cashed and used to care for him is his 3 shares of Volkswagen stock.  I printed out copies of those statements for 18 months. I printed copies of his savings account statement that he proudly earns $.08 monthly.  I printed out copies of our checking account that his SSI check is deposited into.  I printed out new mortgage data (we refinanced last year).  I didn’t have any utilitiy bills with us and was sure SSI would require I get them.

We arrived 10 minutes before our appointment with R. Martinez carrying large files.   We waited in the Social Security lobby for 5 minutes before being called into the back office to see Mr. Martinez.  He was easy cordial and got right to work.  He swore us in, do you promise to tell the truth the whole truth… .  He asked if we authorized SSI to access our bank account to which Patrick’s checks are deposited.  We did.

He asked if Patrick was still working I said no.   He later said if he begins working again let them know.  That was it.

He asked Patrick had been out of the country for a month or more in the last year and a half, committed any crimes,  if he had funeral plots or headstones, any income accounts, vehicles or boats, lived anywhere else during the year. There were  a bunch of obscure questions like these.  Nothing about the things that we do pay for just the items we do not.  I assume the reason for this is that Patrick has no other income than SSI, and the $50 from his stock, which remains untouched from the first day we bought them.  We transfer 100% of his check each month into our checking account.

I gave him the printouts of Patrick’s VW stock accounts and that was it.

He printed out a final copy of our  information which was based mostly on last years appointment. I told him our mortgage was different.  He said that’s ok.  He didn’t want or need it.

We walked out of the Social Security office 20 minutes from the time we walked in. It was great.  Anyone else have any experiences with SSI Redetermination appointments?

Help! Any parents have experience with behavior problems?

August 11, 2014 in Day to Day Life by Judy Melville

There haven’t been any posts from me lately.  I have been putting off sending out words to everyone for a time when I had some wisdom or information to share. It’s been months and I’m still none the wiser. Unfortunately I feel I can’t wait until the clarity arrives because I’m beginning to wonder if there will be any again. I’m lost and am looking out to special needs parents for insight.

It’s been a tough year at our household. A lot of things have changed, the autistic nightmare. Last summer we went to Australia for 3 weeks on vacation instead of the usual Hawaii. His sisters said we broke him there. Patrick started a new adult group when we got back. His brother got married. One sister started college and moved away. Another was a senior and was planning for college. Both sisters are about to leave for college. Each one of those things changes his day.

Patrick can’t express his feelings. Sometimes I think he misses his sisters. They are both home this summer and his behavior hasn’t changed.  He can’t think about the future. It can’t be that he’s grieving over their impending departure.  How can I know really what’s going on inside him?

He has become opening disagreeable. He refuses to follow the rules. He’s sneaking around the rules on the computer. I’ve had to take away his passwords to Facebook and Email. We received calls from private, expensive colleges for him who was replying to his inquiries about their computer tech programs. He intentionally picks fights with his Dad and myself over silly things, like what he did 6 years ago or wearing sweats in the summer. He does the same with his boss at Tender Greens and his aid at his group. He refuses to transition from one task to the other. He acts out inappropriately, occasionally physically.  His Dad thinks at 24 his just coming into his teenager self.  He went through puberty in High School.  How can that be?

His behaviors occur out of the blue. Most of the days I thought he was in a pretty good mood. Each time I was shocked. Several days I knew he was tired or agitated and was pacing back forth all day waiting for a call from the group but nothing. I would try leaving him at home with no stressors. That doesn’t work either. He’s autistic he needs to keep a schedule.  My conclusion here is that I have no clue about when or how he will react. I’m at my wits end. I have no insight to share with anyone.  In fact I need help.

Does anyone have any experience with this sort of behavior? Does anyone know of any therapist or counselor that can help adults who are autistic? Has anyone sought ABA support for his or her adult?

Guilt and Voodoo by Pattie Krohn

May 1, 2014 in Day to Day Life, Everyday with Special Needs by Judy Melville

           Hi, everyone.  It’s been awhile since I’ve shared anything.  I know you will enjoy reading this essay.  It is written by my friend and novelest Pattie Krohn.  http://www.amazon.com/s/ref=dp_byline_sr_book_1?ie=UTF8&field-author=Pattie+Leo+Krohn&search-alias=books&text=Pattie+Leo+Krohn&sort=relevancerank.   Each of her books are excellent.  My favorite is “I Love Your David Foster Wallace”.  Try them all.  You can download them on your kindle for $5.  Several of them are also available at the San Diego Public Library.  Check them out.

      She started this essay in 2000. It’s a recollection of her experiences in the 1990s when her special needs son was a child.  It brought tears to my eyes.

Guilt and Voodoo

      From the beginning Mike was different. He seemed fragile. I wouldn’t even let the nurses take him to the nursery.  I wanted to hold him constantly.  He didn’t look at me but always some point over my head. He had trouble nursing because he lacked muscle tone. One day at the park while my daughter was swinging and I was holding Mike, an old Persian woman sat down next to me.  She said, this baby needs to eat. She grabbed one of my breasts and flipped it up and down like a wallet. My breasts were empty because Mike wasn’t nursing well.

       He was so light at his first vaccination appointment that he could not get his shots.  When we laid him on the crinkly paper on the examination table he arched his back in fear, a probable indication of a neurological problem. The pediatrician was alarmed and asked me politely if I might like to give the baby a bottle of formula.  Mikey drank it as if he were starving.  Why hadn’t I noticed how thin he was?

     He put on weight, but by one year it was clear that Mike had a problem.  The pediatrician sat me down to tell me what he knew. He assured me that Mikey would have just a fine life; it was my life that would become difficult.  I cried.  He gently told me that I could love a disabled child as well as a normal child.  That wouldn’t be a problem. I wanted to know what I had done wrong.  How did I let this happen?  The pediatrician’s response to this day still gives me solace.  He asked me if I were responsible for my bright and happy daughter.  “No,” I answered, “of course not.”  He said, “Then why are you responsible for this?”

     That response was too rational. I believed like most mothers do that this was my fault.  I went over and over the details.  Was it the time I opened the centrifuge in the lab and was met with a puddle of radioactive iodine?  Was it the bad Chinese food I had in Tucson?  The torn up slab in the apartment?  Cosmic rays?  What?

     No one knows what causes autism.  There seem to be as many types as there are children.  Since the incidence appears to be rising (could it just be a difference in diagnosis now that autism is a “spectrum disorder”), there are many speculations: a bad gene cluster, vaccinations that contain mercury, environmental toxins.  At that point, after I had considered everything that could have possibly gone wrong, it seemed like bad luck.  But back then sitting there in the doctor’s office, it was certainly my fault. Mothers of children with disabilities have this massive pernicious guilt, or at least some explanation like God gave her an angel to take care of.  And even though mothers donate only half the genes, this is entirely on us.  It doesn’t matter that that is irrational.  We shared our blood with the baby.

     We want to fix it and there are plenty of people who want to help us.  I think I either met them all or at least heard about them from other mothers.  We went to physical therapy, speech therapy, and occupational therapy. Mike didn’t mind these things; it was fun.  We played a lot with therapists and the county picked up the tab.  But then it got more serious.  The physical therapist recommended leg braces (his one knee pointed inward for a while) and the social worker wanted blood tests, urine tests, and a muscle biopsy.  They suggested a brain MRI.  A MRI in little babies requires a total sedation and muscle biopsies really hurt.  I was not about to do anything of the sort —tests, biopsies, or braces until I got other opinions.  The pediatric orthopedic surgeon said that leg braces were something left over from polio days.  They did nothing.  He felt confidant Mike would do fine without them.  He did.  The leg corrected itself.  The pediatrician calmly supported my decisions.  He agreed those tests weren’t relevant.  But then I was faced with “cranial manipulation therapy” and “patterning” and “brushing” and the special diet touted to alter his behavior and the very expensive homeopathic drops that were said to fix anything and everything.  Since I was to blame for this problem, I asked my pediatrician how far I should go to try to fix it.  He quietly said that there is a difference between therapies that are simply ineffective and those that are plain charlatanism.  He said it without looking at me, but it was all he had to say.

     I know mothers who have tried it all, who frantically look for the one special trick that is going to change everything.  I know mothers who spend their time driving from clinic to clinic, loading up their credit cards, and scouring the Internet for the one article out of fifty on the topic that will support some screwball idea.  We are desperate.  When the social worker found me balking at various “therapies” she actually yelled at me, “He’s cute now, but WHAT ARE YOU GOING TO DO WHEN HE IS SIXTEEN?”

    It’s hard to say no when there is no proof that any intervention does anything at all. I think that children in a loving home will reach their genetic potential no matter how much money you spend on therapies, occult or otherwise, and then reach a plateau where not much will change.  I believe that I can’t change Mikey’s neurology any more than I can change my eye color.  He is wired differently.  He has different genes.  And even though after 25 years I still feel that somehow this was my fault, I can honestly say that now I wouldn’t change a thing.

Again that was written by parent and novelest Pattie Krhron.  http://www.amazon.com/s/ref=dp_byline_sr_book_1?ie=UTF8&field-author=Pattie+Leo+Krohn&search-alias=books&text=Pattie+Leo+Krohn&sort=relevancerank.


INTEGRATED WORK SERVICES-Towards Maximum Independence – TMI

November 15, 2013 in Group Programs by Judy Melville

Starting a new group

Starting a new group

TMI (Towards Maximum Independence) is a well known provider of day programs in San Diego.  Everyone I’ve spoken to who knows them has positive things to say.  The thing I like best about them is their flexibility.   They are accommodating to the needs of our adults.  As parents, that is a priority.

Patrick and I  spoke with the people at TMI before he left the TRACE program, about Individual Employment. We liked the people we met.   Patrick’s buddy from Trace who lives in our neighborhood joined one of their Integrated Work programs.  We met with TMI again in an attempt to get Patrick into that specific group.  They were amenable because one of the group members lived in Clairemont.  He could move to a group in his neighborhood. The rest of them live in our neighborhood, Point Loma.  We were this close to signing on the bottom line.

Patrick really wanted to go college and I was convinced there was a way to get him there.  Y’all know about his interviews with College to Career, Tailored Day programs and Mesa College.  Instead of joining his buddy’s job group, we got him to college.   He had minimal supervision.  I took him myself for a semester.  (That made us both crazy.)  I hired someone else to take him to one of his classes.  That worked partially.   The problem was  that he has a hard time paying attention for long periods of time.  Particularly when the professor is discussing something that doesn’t interest him.  Additionally the schedules were varied.  Not his favorite!!!  Being a “college student” takes a lot of patience.   He had some when he started but lost it the second semester.

The bottom line for Patrick is he needs to have his dance card completely filled each day with items that he can count on coming to fruition .  Half of his day was covered. Initially I thought his job at Tender Greens would develop into a more than half time job.  Between part time school and half time work, he’d be busy.   His job has not turned into more hours.  We had to regroup and move forward.

He’s not a fan of regrouping.   Changing schedules is like purgatory for him.  Despite everyday breakdowns of mental exhaustion, he believed his program at college was the best.   That a different life could be easier is incomprehensible.   We had to force him to change programs.

We re-checked in with Rick Baca (rickb@tmi-inc.org) at TMI again.   They were amenable to moving the one group member and letting Patrick into their program.  He would be with his buddy.  He would be doing things in our neighborhood that he had done before (going to the YMCA, going to the library, easy peasy).  It’s almost like going back into TRACE.

We went to TMI offices at 4740 Murphy Canyon Rd, San Diego, CA 92123.  (858) 495-0863 .  We met with Mr. Baca who went over all of the procedures and rules for their Integrated Work Program. Patrick signed the paperwork himself.  At the end of the meeting Mr. Baca  gave Patrick a copy of the weekly schedule with the exact times they arrived and left each location.  I could’ve kissed them.

We went on vacation while the other adult in the group transitioned to a group in Clairemont.  When we got back Patrick started right away.  That day and every day since he has  right away exclaimed that he had a great day.  He had fun.  Yea!!

His “Job Coach” comes to the house every morning at 8:30am to pick him up.   She drops him off promptly at 2:10.  They all work out at the YMCAs.  They use the gym after they clean toys.  They go to a special needs Zumba class at the Peninsula Y on Fridays.  We’ve been long time members of the Y and the TRACE group went to the Zumba class.  The PB TRACE group used to walk to the PB Library every week, and also clean up at the Rec Center.  So all of these things Patrick had done before many times.  He is back into his old routine.  He very much needed some stability.

Patrick has another adult friend who works through TMI, at Vons in La Jolla, full time, member of the union, with an aid.  He’s worked there for many years.  The people at Vons love him and look at for him.  We have another friend whose son works at that Vons in La Jolla 20 hours a week.  They have 2 adults in their group and a full time aid.  They are also happy with the program.

TMI told us they would be happy for us to find employment for the group around our neighborhood.  There’s one catch, in order for Patrick’s group to work at a for profit organization, each of the individuals have to be paid minimum wage.    You can only “volunteer” at non-profit organizations. Hey, maybe Patrick’s group could get a job at Vons in Liberty Station!  One change at a time!!

 

 

 

A Full Life with Autism by the Sicile-Kiras

September 16, 2013 in Book Review by Judy Melville

by Chantal and Jeremy Sicile-Kira

by Chantal and Jeremy Sicile-Kira

If you have an adult who is high functioning ID (Intellectually Delayed), this book will be indispensable to you.  If your adult is high functioning autism, this may be your new bible.  As the title states, it is a book about issues for those with Autism. Most apply to all people with special needs.  It is first and foremost a reference book.   Each chapter ends with many references for books and websites.    Patrick is not high functioning.   I still found a lot of resources useful for him.  Additionally, I was reminded of a few ideas I had previously for Patrick and had forgotten in the business of day to day.  I’ll share them with you.

I’m going to refer to the Sicile-Kiras as Jeremy and Chantal because after reading what they share in their stories I feel like they are friends.

 Each chapter is filled with information and very personal stories from Chantal and Jeremy.  Intertwined is heartfelt commentary from her son, Jeremy, on most of the issues.  The book addresses many issues, education, employment,  relationships, community, living arrangements.    She gives suggestions for each topic.  Jeremy gives 10 helpful tips on each issue at the end of the chapter.  Some are unrealistic from my perspective others are astute.  For Fostering Life Skills he says “Teach your child to self regulate.  My brain having autism gets me in situations where I can’t think.   The very best thing that helps me self regulate is the freedom to pick my goals and work on them.”  Chantal closes each chapter with references, books, organizations and  websites.

 Jeremy understands that he needs a team of people (he calls “Team Jeremy”) to support him through life.  He speaks using the (RPM) Rapid Prompting Method facilitated by an iPad and aid.  With the support of his team, headed by his mother, renown Autism specialist Chantal Sicile-Kiras, he graduated from high school and passed the California exit exam.    His goals in life is to go to college, get a job, get married and own a house.  Chantal is trying to help him get there.

Bottom line for our adults is COMMUNICATION.  It’s there in every chapter, in every issue, regardless of our adults diagnosis.  That’s the scary part, right?  They could do a lot of things if they had a full time interpreter.  Jeremy frequently thanks his mother in the book for being such a good advocate for him.  

Chantal is a huge advocate of self employment. Given the labor market and the abilities of our adults, finding a job is difficult.  With the internet there are many ways you can have your adult in a business.  Jeremy started writing.  He co wrote this book, didn’t he.  Keen way to be self employed!  Remember  if you hire an aid to asist your adult in his entrepreneurship, the upstart organization can pay the salary of the staff.  Of course you have to make enough money for that.  It’s  a great ideal.  One I had put aside and might readdress for Patrick.

If your adult has difficulting communication verbally and  you are interested in a communication board, a light writer or IPAD, it is possible the MEDICARE  will sometimes provide one for them.  The link to that is medicare funding.

In order to make our adults dreams come true requires support, which is often not forthcoming from the Regional Center  or other state agencies.  She describes some experiences with the Regional Center and also with Disabled Student’s Programs and Services at the community colleges in San Diego. They live in San Diego so many of the references she gives are local.

The book is written from the perspective of one who has the expertise and resources to provide an ideal lifestyle for her child who requires around the clock assistance, often with multiple caregivers.  Her son has multiple physical issues in addition to being autistic, like most of our adults.  She has wonderful ideas that you might be able to incorporate into your adults life.   For the references she provides alone the book is worth its price.  If you are interested in purchasing the book go here.

 

Photo taken from google images courtesy of www.autismcollege.com