Our 1st Week in Arizona
Our first week was very busy with unpacking and our first two appointments.
The Appointments:
We first saw the Division for Developmental Disabilities(DDD). In Arizona with a kiddo like Jake you start with DDD and they then refer you to the Medicaid system. We have completed the beginning paperwork, and now are waiting to see if they are referring us forward to the Arizona Long Term Care which is Medicaid. And the wait continues.......
Our first week also included an appointment with Jake's new Primary Care Provider a super nice Pediatrician at Tucson Medical Center with the Critical Care Clinic. It was a really wonderful appointment. The doctor took his time and went over Jake's immediate needs, He then made a list of doctors he wanted us to see. Many of the specialists in Tucson rotate out of this clinic so Jake with have Continuity of Care. He then explained to us that their clinic operates on a HEALTH HOME MODEL. I just about cried, when I hard these beautiful words.
After the doctor, he then sent in the social worker for their clinic. Yes, they have their own Social Worker and she knew her stuff. She stated once Jake gets on the Long care system for Arizona, she would then put him in for another Medicaid program called Children's Rehabilitative program. This program would put him at the top of the list to get his PT. OT, and Speech there at the same facility. And the program also provides funds for camps. I asked her what paperwork I needed to do, and she said she would take care of it. I could have kissed this woman. I have NEVER met a Social Worker that was this knowledgeable and kind.
After the Social Worker left, the Pediatrician's nurse walked in. She stated she wanted to get our appointments set up and sat down at the computer with the list the doctor gave her. She made many of the appointments at that clinic, but she said some of the others the doctor wanted Jake to see sooner. She said she would call the other doctors, and give me a call with the appointment dates/times. In fact, if I had not heard from her in 10 days to give her a call. I am giving this clinic 2 thumbs up, and big ole Texas GRIN!!!!
I left a message with the school system last week, but have not heard anything yet. They are on summer break, so I am following up with them today. Fingers crossed we can get home bound services started for the Monkey child.
So far our experiences have been impressive.
Thursday, June 18, 2015
Thursday, June 11, 2015
Why did we make the decision to leave Texas?
We decided to retire in Texas in 2009 to be near my sister. They are also very good to their veterans in the great state of Texas. Our plan was to get to know people, and help create change for kids like our son. It was an incredible five and a half years and we met some amazing people.
Our issues with the Texas Medicaid services began when we first set foot in the state. Jake was placed on a wait list that was 8 years long for services. Luckily we met an amazing woman who shared with us a way to get around the wait list, and she felt confident that Jake would qualify. Jake did qualify and we spent a night in a nursing home with him to get him on Medicaid. That one night in a nursing home was a very depressing moment for our family. Before medicaid we were easily spending about $500 extra a month in co pays, diapers, and Pediasure. After Medicaid we felt a great sense of relief since they covered all the expenses Tricare did not cover.
As most people know I used to be a Social Worker, and I am always interested in finding ways to help families. And I love to learn about services for our kids. At a doctors appointment in 2013 a Developmental Pediatrician asked us why we were not getting nursing hours for our son. I told him we did not know we could get nursing. At many times in Jake's life I have felt incredibly stupid for not knowing all the services out there for him. The doctor stated Jake clearly needed nursing because of all his daily living needs, and encouraged us to apply. We did apply and received nursing hours temporarily, until one day we got a denial. We would spend the next 6 months appealing and having a hearing to get nursing services back. Jake did not qualify for nursing hours because he did not have a "mechanical need". Jake does not have a gtube, or trach. We do have to do a cath but not frequently enough. And since we started to home school him, we have been able to greatly decrease his seizures. I talked with many people trying to understand why we did not get nursing hours, and one person summed it up correctly, " You are doing a great job keeping him healthy, and Texas only helps the children that are frequently hospitalized." It was explained to me that there are many families in Texas like ours. We all have children with significant medical needs and disabilities, but as long as they stay stable Texas does not see a reason our families need assistance.
On a side note every year we had to renew his Medicaid eligibility we were afraid he would be removed off of services. We were like many families in Texas, not sure if we would remain on Medicaid.
Since we lost the nursing hours, the physician for medicaid encouraged us to put in for attendant hours. She stated that Jacob clearly has significant needs and a attendant would be a better option. We again started the process to get an attendant. The issues with attendants are that they cannot give Jacob any of his medications, and do not feel comfortable with me leaving the house due to his seizures. We found a great attendant, and of course within 4 months received yet another denial. I made the decision to appeal again, and we were provided with free legal representation. Jake was denied attendant hours because I did not take a paycheck for the non profit organization that I started in 2009. My husband and I had been paying for all of the website, and operation expenses for the organization. I was able to operate it on a extremely tiny budget. Our goal was to one day get funding, so that I could get a paycheck. I spent about 20-25 hours a week working for Caregivers Ladder. The State of Texas considered my work volunteer work. We had the hearing and again lost. One of the most disappointing aspects of the hearing was when the state of Texas introduced into evidence a newspaper article that was done about our family supporting CBD oil. Our attorney stated it was a move to make me look like either a bad mother, or a trouble maker. The article was in support of CBD oil which greatly helps children with seizures, and referred people to the Texas Epilepsy foundation for additional information. Our loss was stricly due to one hearing officers decision that after all the letters my board members provided and the families, it was still volunteer work.
During the 2nd hearing I was discussing with University of Texas Center for Disability Studies to have Caregivers Ladder become part of their center. I would not only earn a paycheck, but could continue to grow the organization to help many families across the country. After the hearing the President of our Board of Directors ran into the folks at UT and they stated they did not have the funds to help the organization. We were then given an opportunity to broker a deal with Texas A & M, but at this point we decided we needed to leave Texas. It had become apparant to my family that every step forward we take in Texas, we seemed to continually take 5 steps back.
We had lost 2 hearings, which multiple advocates in Texas could not believe how our family was treated. After a lot thought, and consideration we could not find any reason to stay in Texas. People are very nice, but there was no services for Jake. And since he is fourteen years old we are fast approaching adulthood. The area we lived at in Texas was very limited on what they provide for adults with disabilities. It had become apparent to us that staying in Texas meant a continual fight for everything for our son.
It seemed that everything kept pointing us in the direction of leaving. As I researched places to live I discovered that Arizona was #1 in services for people with disabilities. Arizona is where I grew up, and I was more than happy to move home to be near family. We had to say goodbye to the wonderful families in Texas.
Now you know how we ended up in Arizona.
We decided to retire in Texas in 2009 to be near my sister. They are also very good to their veterans in the great state of Texas. Our plan was to get to know people, and help create change for kids like our son. It was an incredible five and a half years and we met some amazing people.
Our issues with the Texas Medicaid services began when we first set foot in the state. Jake was placed on a wait list that was 8 years long for services. Luckily we met an amazing woman who shared with us a way to get around the wait list, and she felt confident that Jake would qualify. Jake did qualify and we spent a night in a nursing home with him to get him on Medicaid. That one night in a nursing home was a very depressing moment for our family. Before medicaid we were easily spending about $500 extra a month in co pays, diapers, and Pediasure. After Medicaid we felt a great sense of relief since they covered all the expenses Tricare did not cover.
As most people know I used to be a Social Worker, and I am always interested in finding ways to help families. And I love to learn about services for our kids. At a doctors appointment in 2013 a Developmental Pediatrician asked us why we were not getting nursing hours for our son. I told him we did not know we could get nursing. At many times in Jake's life I have felt incredibly stupid for not knowing all the services out there for him. The doctor stated Jake clearly needed nursing because of all his daily living needs, and encouraged us to apply. We did apply and received nursing hours temporarily, until one day we got a denial. We would spend the next 6 months appealing and having a hearing to get nursing services back. Jake did not qualify for nursing hours because he did not have a "mechanical need". Jake does not have a gtube, or trach. We do have to do a cath but not frequently enough. And since we started to home school him, we have been able to greatly decrease his seizures. I talked with many people trying to understand why we did not get nursing hours, and one person summed it up correctly, " You are doing a great job keeping him healthy, and Texas only helps the children that are frequently hospitalized." It was explained to me that there are many families in Texas like ours. We all have children with significant medical needs and disabilities, but as long as they stay stable Texas does not see a reason our families need assistance.
On a side note every year we had to renew his Medicaid eligibility we were afraid he would be removed off of services. We were like many families in Texas, not sure if we would remain on Medicaid.
Since we lost the nursing hours, the physician for medicaid encouraged us to put in for attendant hours. She stated that Jacob clearly has significant needs and a attendant would be a better option. We again started the process to get an attendant. The issues with attendants are that they cannot give Jacob any of his medications, and do not feel comfortable with me leaving the house due to his seizures. We found a great attendant, and of course within 4 months received yet another denial. I made the decision to appeal again, and we were provided with free legal representation. Jake was denied attendant hours because I did not take a paycheck for the non profit organization that I started in 2009. My husband and I had been paying for all of the website, and operation expenses for the organization. I was able to operate it on a extremely tiny budget. Our goal was to one day get funding, so that I could get a paycheck. I spent about 20-25 hours a week working for Caregivers Ladder. The State of Texas considered my work volunteer work. We had the hearing and again lost. One of the most disappointing aspects of the hearing was when the state of Texas introduced into evidence a newspaper article that was done about our family supporting CBD oil. Our attorney stated it was a move to make me look like either a bad mother, or a trouble maker. The article was in support of CBD oil which greatly helps children with seizures, and referred people to the Texas Epilepsy foundation for additional information. Our loss was stricly due to one hearing officers decision that after all the letters my board members provided and the families, it was still volunteer work.
During the 2nd hearing I was discussing with University of Texas Center for Disability Studies to have Caregivers Ladder become part of their center. I would not only earn a paycheck, but could continue to grow the organization to help many families across the country. After the hearing the President of our Board of Directors ran into the folks at UT and they stated they did not have the funds to help the organization. We were then given an opportunity to broker a deal with Texas A & M, but at this point we decided we needed to leave Texas. It had become apparant to my family that every step forward we take in Texas, we seemed to continually take 5 steps back.
We had lost 2 hearings, which multiple advocates in Texas could not believe how our family was treated. After a lot thought, and consideration we could not find any reason to stay in Texas. People are very nice, but there was no services for Jake. And since he is fourteen years old we are fast approaching adulthood. The area we lived at in Texas was very limited on what they provide for adults with disabilities. It had become apparent to us that staying in Texas meant a continual fight for everything for our son.
It seemed that everything kept pointing us in the direction of leaving. As I researched places to live I discovered that Arizona was #1 in services for people with disabilities. Arizona is where I grew up, and I was more than happy to move home to be near family. We had to say goodbye to the wonderful families in Texas.
Now you know how we ended up in Arizona.
Tuesday, June 2, 2015
Introduction to the Blog
My name is Michelle Bartlett and I am the proud mom of a handsome young man Jake. He is 14 years old and is incredible. We have lived in Texas since December of 2009, and have been battling for services since the moment we set foot in state.
Over the years we have had many challenges with finding services for our son. And as most families of special needs children know life can be challenging. In our case it is the outside world that complicates things for us.
Our Top 5 Challenges:
Medicaid
Schools
Doctors
Insurance Companies
People not familiar with Children with Disabilities
Most people would think having child with a disability is challenging, but let me tell you the disability is the easy part. It is the outside factors that make things complicated
We decided to do this blog to share with all of you our family's journey moving from the #50th state in the country to the #1 state in the country in services for individuals with disabilities. The rankings are created by the United Cerebral Palsy Organization. (http://cfi2014.ucp.org)
We are realistic that things are not perfect in Arizona, but we are hopeful that things will be better than Texas services. In our blog I will share with you the complications we had in Texas. And as we get services set up for our son in Arizona, I will share with you what things look like for children with disabilities there.
Note to readers: Our son is diagnosed with 4p- syndrome, Developmental Delay, Cerebral Palsy, Epilepsy, Mitochondrial Disorder, Autism, Vision Impairment, Feeding Difficulties, Osteoporosis, and the list goes on.
He is an amazing kid first, who just happens to have many diagnosis'. Most people think if your child is multi-handicapped and has a severe developmental delay, services are there for the children. You will learn this is not True.
Over the years we have had many challenges with finding services for our son. And as most families of special needs children know life can be challenging. In our case it is the outside world that complicates things for us.
Our Top 5 Challenges:
Medicaid
Schools
Doctors
Insurance Companies
People not familiar with Children with Disabilities
Most people would think having child with a disability is challenging, but let me tell you the disability is the easy part. It is the outside factors that make things complicated
We decided to do this blog to share with all of you our family's journey moving from the #50th state in the country to the #1 state in the country in services for individuals with disabilities. The rankings are created by the United Cerebral Palsy Organization. (http://cfi2014.ucp.org)
We are realistic that things are not perfect in Arizona, but we are hopeful that things will be better than Texas services. In our blog I will share with you the complications we had in Texas. And as we get services set up for our son in Arizona, I will share with you what things look like for children with disabilities there.
Note to readers: Our son is diagnosed with 4p- syndrome, Developmental Delay, Cerebral Palsy, Epilepsy, Mitochondrial Disorder, Autism, Vision Impairment, Feeding Difficulties, Osteoporosis, and the list goes on.
He is an amazing kid first, who just happens to have many diagnosis'. Most people think if your child is multi-handicapped and has a severe developmental delay, services are there for the children. You will learn this is not True.
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