Part 2 Blog #5D Know Your Child: More About Law & Autism and < My Thoughts > by Sara Luker
Beyond the News, May 2015, talks about The State of IDEA, 40 years later. IDEA requires states and districts provide a free, appropriate public education (FAPE) to students with disabilities. It also mandates and Individualized Educational Program (IEP) for each student with disabilities. They also inform us that the number of student disability groups have declined since 2005… BUT the number of students within these groups has been on the increase by 93%. Those groups are – autism, asthma, epilepsy and diabetes. This places a larger financial burden on the states and local governments who serve this population.
Continuing, they state in this article that the Federal government will have to supply states with more than $20 billion dollars per year in additional special education funding to meet their commitment. And, that districts serving low-income students and students of color receive 10% less per student than those serving white and more affluent students.
< My Thoughts > “…receive 10% less per student…”
Added to that, my experience in teaching in a rural area, where families covered a wide range of socio-economic differences, there were other marginalizing factors. First, let me explain some of those socio-economic differences. Some families were living in a rural area by choice and some because they were able to live off the land, so to speak. Parents may have a lovely home with stables for horses, garages for expensive vehicles, and a landing strip for their private plane. Or, parents may be living off food stamps, their housing resembling more of a shed or lean-to.
There is one Pre-school through 12th grade public school and one Charter High School. Both had a Special Education Department with highly qualified Special Education Teachers, but the other professionals who served the disabled students were Public School ‘itinerant’ persons traveling weekly or monthly between city schools. That included the School Nurse, School Psychologist, Speech Therapist, Physical Therapist, Occupational Therapist, Vision Therapist, and even the School Librarian.
You may ask how or why does this matter? Well, it matters because when writing and presenting an IEP, the team members should/must include many of these people. The logistics of receiving their reports, evaluations and time available to attend and meeting coordinated with others and the parents, becomes extremely difficult. This is important because creating and tracking the students’ IEP goals require continuing input from these professionals. Try to find out how often a therapist will provide service to your child, because many large school districts don’t have nurses and therapists as ‘full-time’ staff members. Just saying.
Slade, et al. (2018) gathered information about how parents of children with Autism Spectrum Disorder (ASD) felt about the Individualized Educational Program (IEP) services for their child. They found that the heightened demand on schools to provide for the educational needs of these ASD students is often extremely challenging. The ‘cost’ to parents was them finding great dissatisfaction with the process and also with the number of years experience, or lack thereof, associated with the program’s teachers.
Parent satisfaction/dissatisfaction was tied to four aspects of the IEP process –
They comment that program violations and general parent dissatisfaction, in some cases resulted in IEP-related litigation. This litigation went forward because the child was placed before an IEP was developed by a qualified IEP team. As well as a possible ‘mismatch’ between those services stated and those actually provided. Parents also complained that they were not included in the planning, nor were they involved in the data collection. Some parents felt that their child’s behavior problems increased as a result of the poor ‘blueprint’ (IEP) which had been hastily created for their child.
< My Thoughts > “…possible ‘mismatch’ between the services stated and those actually provided.”
Even without moving to litigation, 42% of the parents surveyed felt that half or all of their child’s IEP aspects were lacking. In other words, there was no fidelity between what the IEP, a legal document, stated the child would receive in services… and what s/he actually received. I would like to add to that… there is often an ‘itinerant’ professional sent weekly or monthly to provide those services. Plus, that itinerant person may be not even be ‘highly qualified’, nor may they be doing ‘follow-up’ with the child’s Teacher of Record (TOR), nor the IEP team. Just saying.
And then, behavioral problems and communication problems often go hand-in-hand for the child. Are the primary specialists/therapists and other specialists/therapists collaborating so as not to be giving the child conflicting goals? In my experience, communication and behavior goals need constant follow-up, parental input, and often more than monthly revision. So, you can see how complex this whole business is. Because each child on the Autism Spectrum is SO different, it may take the approach of a warrior and sleuth. P.S. as you may have already read… each goal and goal change requires IEP revision and, and, and, notification to ALL of the child’s teachers. Smiles.
Byrd & Payne (2018) say that the emotional impact of parenting a child with autism is compounded by the numerous practical demands placed on families by therapies, interventions, financial burdens, medical care, and reduced work opportunities. This may be more harmful than the child’s cognitive or behavioral limitations.
Byrd goes on to say that parents of a child with autism are nearly twice as likely to divorce as parents without a child with autism. That risk of divorce remains high throughout that child’s lifetime, extending into adolescence and young adulthood, according to research. Of course they state that the families individual ability to show resiliency is a determining factor.
The Judicial case law address the cases where autism spans parental rights, as well as both parents being treated fairly and equitably while preserving the best interests of the child are in the courts hands when divorce is involved. The courts may also insist that parental support continue beyond the age of 18 years. In that case, the courts may also deem that the juvenile has the capacity to participate in any hearings. The courts may have a greater say in ‘overnight visits’, quality of and moving of parental residences.
Other considerations for the court are shared custody and whether both parents can provide proper parenting and meet the child’s needs. Considerations for parenting the child with a disability or multiple disabilities include… but are not limited to which parent can best deal with the child’s:
< My Thoughts > “…‘overnight visits’, quality of and moving of parental residences.”
At this point, I wish to share how one family handled this type of situation. This is a Focused Excerpt from my Extended Book Review of – 3500: An Autistic Boy’s Ten-Year Romance with Snow White, by Ron Miles; eBook 2013 Edition; with < My Thoughts > by Sara Luker
Excerpts from the book – (60% indicates location in the Kindle version of the book, instead of page numbers).
6% The final blow to our marriage was my father’s death. I went into deep depression, and I am sure I was both a bad husband and a bad father for months. It would take over a year to finalize, but our marriage was over.
Although we had the standard court-ordered parenting plan that said something like “one weekend per month, two weeks in the summer”, in reality we fell into a rhythm of Ben being with his mom during the week and with me on the weekends.
22% I remembered a trip we had taken Ben on to the Magic Kingdom. His mother and I were stunned at how much he was enjoying the trip. There was even a time when non-verbal Ben spontaneously called out “Snow White”. That was the moment when I knew right down to my core that Walt Disney World was the single biggest piece of magic that had ever entered Ben’s life.
23% Spring turned into summer, and the difference between Ben-At Disney and Ben-In-The-Real-World was very stark indeed. The difference between his maddening behaviors and him skipping his way through the Magic Kingdom and I began to wonder if maybe he actually belonged there.
24% I tentatively brought it up with his mother… Should we uproot both households and move to the opposite corner of the country so that our profoundly disabled child could go play in the Magic Kingdom year round? It seemed ludicrous, yet neither of us could get it out of our heads.
The only rational thing to do would be to plan a second vacation to Walt Disney World and see if he showed the same response again. If he didn’t then no harm, no foul. We would have an answer and abandon the idea of the move. If he did, then we would start making concrete plans.
26% Naturally, the universe does not like it when life gets too easy or too predictable. I was on a direct course to moving 3,000 miles across the country to go live in a theme park. So that’s when I fell in love.
For several years after my divorce, I didn’t even date. Then I invited Kris, whom I had met through friends, to a company party. She said it was love at first sight for her. It took me a while to catch up. But months later, I left my new love Kris behind in Seattle and headed to the airport with my son and my ex-wife. Weird, right?
42% Ben’s mother had already found a new home directly to the northeast of the Disney property. I opted for an apartment to the southwest of Disney.
End of excerpts from the book.
Note: Complete Extended Book Reviews with < My Thoughts > by Sara Luker may be found on my website www.sarasautismsite.com by book title.
REFERENCES used are:
Byrd, Esq., K. & Payne, R. (2018). Lighting Up Family Law in Blue: Autism’s Impact on the Family & Family Courts. KBYRD.JDWFU2013@gmail.com.
Slade, N., Eisenhower, A., Carter, A. & Blacher, J. (2018). Satisfaction With Individualized Education Programs Among Parents of Yound Children With ASD; Exceptional Children; V84:3, p242-260.
===========================
Beyond the News, May 2015, talks about The State of IDEA, 40 years later. IDEA requires states and districts provide a free, appropriate public education (FAPE) to students with disabilities. It also mandates and Individualized Educational Program (IEP) for each student with disabilities. They also inform us that the number of student disability groups have declined since 2005… BUT the number of students within these groups has been on the increase by 93%. Those groups are – autism, asthma, epilepsy and diabetes. This places a larger financial burden on the states and local governments who serve this population.
Continuing, they state in this article that the Federal government will have to supply states with more than $20 billion dollars per year in additional special education funding to meet their commitment. And, that districts serving low-income students and students of color receive 10% less per student than those serving white and more affluent students.
< My Thoughts > “…receive 10% less per student…”
Added to that, my experience in teaching in a rural area, where families covered a wide range of socio-economic differences, there were other marginalizing factors. First, let me explain some of those socio-economic differences. Some families were living in a rural area by choice and some because they were able to live off the land, so to speak. Parents may have a lovely home with stables for horses, garages for expensive vehicles, and a landing strip for their private plane. Or, parents may be living off food stamps, their housing resembling more of a shed or lean-to.
There is one Pre-school through 12th grade public school and one Charter High School. Both had a Special Education Department with highly qualified Special Education Teachers, but the other professionals who served the disabled students were Public School ‘itinerant’ persons traveling weekly or monthly between city schools. That included the School Nurse, School Psychologist, Speech Therapist, Physical Therapist, Occupational Therapist, Vision Therapist, and even the School Librarian.
You may ask how or why does this matter? Well, it matters because when writing and presenting an IEP, the team members should/must include many of these people. The logistics of receiving their reports, evaluations and time available to attend and meeting coordinated with others and the parents, becomes extremely difficult. This is important because creating and tracking the students’ IEP goals require continuing input from these professionals. Try to find out how often a therapist will provide service to your child, because many large school districts don’t have nurses and therapists as ‘full-time’ staff members. Just saying.
Slade, et al. (2018) gathered information about how parents of children with Autism Spectrum Disorder (ASD) felt about the Individualized Educational Program (IEP) services for their child. They found that the heightened demand on schools to provide for the educational needs of these ASD students is often extremely challenging. The ‘cost’ to parents was them finding great dissatisfaction with the process and also with the number of years experience, or lack thereof, associated with the program’s teachers.
Parent satisfaction/dissatisfaction was tied to four aspects of the IEP process –
- Content of the IEP document
- Special education services ‘actually’ being provided
- Level of agreement between the document and actual services received
- Effectiveness of the special education (IEP) team
They comment that program violations and general parent dissatisfaction, in some cases resulted in IEP-related litigation. This litigation went forward because the child was placed before an IEP was developed by a qualified IEP team. As well as a possible ‘mismatch’ between those services stated and those actually provided. Parents also complained that they were not included in the planning, nor were they involved in the data collection. Some parents felt that their child’s behavior problems increased as a result of the poor ‘blueprint’ (IEP) which had been hastily created for their child.
< My Thoughts > “…possible ‘mismatch’ between the services stated and those actually provided.”
Even without moving to litigation, 42% of the parents surveyed felt that half or all of their child’s IEP aspects were lacking. In other words, there was no fidelity between what the IEP, a legal document, stated the child would receive in services… and what s/he actually received. I would like to add to that… there is often an ‘itinerant’ professional sent weekly or monthly to provide those services. Plus, that itinerant person may be not even be ‘highly qualified’, nor may they be doing ‘follow-up’ with the child’s Teacher of Record (TOR), nor the IEP team. Just saying.
And then, behavioral problems and communication problems often go hand-in-hand for the child. Are the primary specialists/therapists and other specialists/therapists collaborating so as not to be giving the child conflicting goals? In my experience, communication and behavior goals need constant follow-up, parental input, and often more than monthly revision. So, you can see how complex this whole business is. Because each child on the Autism Spectrum is SO different, it may take the approach of a warrior and sleuth. P.S. as you may have already read… each goal and goal change requires IEP revision and, and, and, notification to ALL of the child’s teachers. Smiles.
Byrd & Payne (2018) say that the emotional impact of parenting a child with autism is compounded by the numerous practical demands placed on families by therapies, interventions, financial burdens, medical care, and reduced work opportunities. This may be more harmful than the child’s cognitive or behavioral limitations.
Byrd goes on to say that parents of a child with autism are nearly twice as likely to divorce as parents without a child with autism. That risk of divorce remains high throughout that child’s lifetime, extending into adolescence and young adulthood, according to research. Of course they state that the families individual ability to show resiliency is a determining factor.
The Judicial case law address the cases where autism spans parental rights, as well as both parents being treated fairly and equitably while preserving the best interests of the child are in the courts hands when divorce is involved. The courts may also insist that parental support continue beyond the age of 18 years. In that case, the courts may also deem that the juvenile has the capacity to participate in any hearings. The courts may have a greater say in ‘overnight visits’, quality of and moving of parental residences.
Other considerations for the court are shared custody and whether both parents can provide proper parenting and meet the child’s needs. Considerations for parenting the child with a disability or multiple disabilities include… but are not limited to which parent can best deal with the child’s:
- Sensory defensiveness regarding daily living routines, such as hygiene.
- Need for protection when the child may pose a danger to themselves.
- Sudden delays caused by the divorce or other factors.
- Autism as well as the challenges of the divorce. And to seek professional guidance, as needed.
- Need and the parents’ need to consistently follow through with necessary programs and services.
- Ability to continue to participate in the any recommended behavioral interventions/programs.
- Need for a parent most able to self-educate and to advocate for the child.
- Develop both emotional and psychological resilience. And a parent who can ‘handle’ the daily stress of parenting.
- Be provided with a quality special education setting and least restrictive environment.
< My Thoughts > “…‘overnight visits’, quality of and moving of parental residences.”
At this point, I wish to share how one family handled this type of situation. This is a Focused Excerpt from my Extended Book Review of – 3500: An Autistic Boy’s Ten-Year Romance with Snow White, by Ron Miles; eBook 2013 Edition; with < My Thoughts > by Sara Luker
Excerpts from the book – (60% indicates location in the Kindle version of the book, instead of page numbers).
6% The final blow to our marriage was my father’s death. I went into deep depression, and I am sure I was both a bad husband and a bad father for months. It would take over a year to finalize, but our marriage was over.
Although we had the standard court-ordered parenting plan that said something like “one weekend per month, two weeks in the summer”, in reality we fell into a rhythm of Ben being with his mom during the week and with me on the weekends.
22% I remembered a trip we had taken Ben on to the Magic Kingdom. His mother and I were stunned at how much he was enjoying the trip. There was even a time when non-verbal Ben spontaneously called out “Snow White”. That was the moment when I knew right down to my core that Walt Disney World was the single biggest piece of magic that had ever entered Ben’s life.
23% Spring turned into summer, and the difference between Ben-At Disney and Ben-In-The-Real-World was very stark indeed. The difference between his maddening behaviors and him skipping his way through the Magic Kingdom and I began to wonder if maybe he actually belonged there.
24% I tentatively brought it up with his mother… Should we uproot both households and move to the opposite corner of the country so that our profoundly disabled child could go play in the Magic Kingdom year round? It seemed ludicrous, yet neither of us could get it out of our heads.
The only rational thing to do would be to plan a second vacation to Walt Disney World and see if he showed the same response again. If he didn’t then no harm, no foul. We would have an answer and abandon the idea of the move. If he did, then we would start making concrete plans.
26% Naturally, the universe does not like it when life gets too easy or too predictable. I was on a direct course to moving 3,000 miles across the country to go live in a theme park. So that’s when I fell in love.
For several years after my divorce, I didn’t even date. Then I invited Kris, whom I had met through friends, to a company party. She said it was love at first sight for her. It took me a while to catch up. But months later, I left my new love Kris behind in Seattle and headed to the airport with my son and my ex-wife. Weird, right?
42% Ben’s mother had already found a new home directly to the northeast of the Disney property. I opted for an apartment to the southwest of Disney.
End of excerpts from the book.
Note: Complete Extended Book Reviews with < My Thoughts > by Sara Luker may be found on my website www.sarasautismsite.com by book title.
REFERENCES used are:
Byrd, Esq., K. & Payne, R. (2018). Lighting Up Family Law in Blue: Autism’s Impact on the Family & Family Courts. KBYRD.JDWFU2013@gmail.com.
Slade, N., Eisenhower, A., Carter, A. & Blacher, J. (2018). Satisfaction With Individualized Education Programs Among Parents of Yound Children With ASD; Exceptional Children; V84:3, p242-260.
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