Stop Paternalizing Children with Disabilities

In the many years I have advocated for children with disabilities, I have frequently encountered those who purport to care so deeply for children with disabilities (rarely their own) that they support methods of care and support and even legislation that purports to protect these children, but when analyzed more closely, does a great disservice to these children by preventing them to live as fully and independently as possible.

My advocacy has included combatting paternalistic policies and practices including segregating children with disabilities in separate schools, which prevents them from making friends with non-disabled children who will help them with sustaining networks in their adult lives.  Even worse, is institutionalizing children with disabilities under the guise of protecting them, but ultimately ruining their chances to live free and independent lives.

It has recently come to my attention that under the guise of helping students with disabilities, Louisiana’s legislature is proposing 2 bills that would undermine those children’s access to a quality education.

House Bill No. 993 contains the following highly damaging provisions:

  1. Waives the requirement that students with disabilities must meet state and local performance standards in order to graduate high school;
  2. Waives the requirement that students with disabilities must pursue the same “rigorous curriculum required for his chosen major by his school as approved by the State Board of Elementary and Secondary Education,” as all other students.
  3. Waives all state and local graduation requirements for students with disabilities.
  4. Waives the requirement that students with disabilities (along with all other students) must read at the “approaching basic” level on either the English/Language Arts or mathematics component of the 8th grade state assessment, as well as the other objective criteria established by the local school district, in order to be promoted from 8th grade to 9th grade.
  5. Waives the requirement that students with disabilities (along with all other students) who score at the unsatisfactory level on the state assessment, must complete a summer remediation program in that subject area in order to complete a high school major in that subject area.
  6. Provides that all pupil grade progressions for students with disabilities shall be determined by the child’s Individualized Education Program (IEP) team.
  7. Provides that if a pupil with disabilities meets her IEP goals, she can receive a high school diploma.

House Bill No. 1015 goes even further down the road of degrading the education of children with disabilities in the name of protecting them.  It would:

  1. Exclude children with disabilities from the same grade promotion standards as all other children and simply allow their IEP team to determine whether to promote the child to the next grade.
  2. Excludes all state and local assessment scores from children with disabilities from the state’s accountability system.

While some may believe that these provisions serve to protect children with disabilities, my experience has demonstrated otherwise.  If these bills pass, Louisiana will be able to graduate its children with disabilities after 12th grade, even though federal special education law clearly allows students with disabilities who need up to 3 more years of education to receive those critical additional years of education.

Furthermore, these bills will make it impossible for parents of children with disabilities to determine how well their school districts are educating their children.  Parents and advocates of children with disabilities fought long and hard for the federal law provision that requires schools to educate children with disabilities in the general curriculum.  These bills take Louisiana down the road of a separate and unequal education for children with disabilities.  This is particularly troubling because the vast majority of children with disabilities are of average or greater intelligence.  Why take those students out of the the accountability system unless Louisiana simply wants to wash its hands of its responsibility for them?

The National Center for Learning Disabilities published an excellent report about the low graduation rates of children with learning disabilities (who by definition have average or greater intelligence).  That report reveals that Louisiana has the 2nd worst graduation rate for such children in the nation (only Nevada is worse).

This graph shows how badly Louisiana’s students with disabilities are faring when it comes to graduating from high school.  As you can see it fares poorly in comparison to both national and other state data.  Indeed, currently more students with disabilities drop out of high school in Louisiana than graduate.

HS graduation rate graphIf these bills pass, Louisiana will look like it is graduating the most students with disabilities even though it is providing less education to them.  Parents and advocates of children with disabilities cannot allow this to happen. Indeed, my fear is that if it happens in Louisiana, your state could be next.  For that reason, national disability advocates should weigh in to oppose these problematic bills.

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For more information on how I can help you accomplish effective, progressive systems change contact Jeff Spitzer-Resnick by visiting his website: Systems Change Consulting.

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Celebrating Independence Day–Escaping Institutionalization

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In a recent case of mine, frantic parents retained me worried over the future of their son, who has autism and challenging behaviors.  Equally troubling was their fear that government overreach was in the process of removing their parental rights.

These parents had done everything they could to help their son succeed at home and in school, but due to state funding limitations of the Children’s Long Term Care waiver, in-home services declined and then virtually disappeared over the past year. Not surprisingly, this evaporation of critical child and family supports resulted in a downward spiral.  First, in mid-fall, the school district determined that it could no longer educate the boy in school and started providing his education in the family home.  Then, the boy’s challenging behaviors escalated.

As the parents sought answers, they received recommendations to send him to a state Institution where the state no longer admits long admits long-term residents, but does provide 30-60 day assessments to, in theory, help families in situations such as these.  Unfortunately, my clients’ decision to send their son to an Institution developed into an over 5 month stay there because the County determined that it needed to take over parental medical decision making and further determined that the child was not fit to return home.  The County pursued this case in court seeking to send the boy to another Institution 4 hours from his home, without a plan for returning him home.  The County even took the drastic step of seeking transfer of medical legal custody of the boy from the parents to the County.

The parents retained me only a few weeks before the scheduled 1/2 day trial. Initially, I contacted the county’s attorney to determine whether settlement was a possibility. Sadly, the County was unwavering on its Institutionalization path and had no interest in settlement.

As the trial began, my first witness was the child’s pediatrician who was strongly supportive of returning the boy home to his family and fully supported the parents’ medical decision-making.  Initially, I felt a need to rush through the case because the court had only allotted a few hours for the trial.  Fortunately, the judge quickly realized that this case was too important to rush and announced that he had cleared his calendar for the following business day as he knew we needed to carefully put on all relevant testimony.

Another compelling witness was the boy’s 17 year old brother.  He told the court that he was the only one who could get his brother to talk and calm down and that he had no regrets that he needed to spend most of his non-school hours at home helping to care for his brother.

For its part, the County only put on 2nd hand hearsay testimony (allowed in these types of cases) critiquing the parents’ caregiving.  While it did not budge from its Institutionalization position, the lead county social worker did testify that if the boy returned home, he would need ample in-home services.  Sadly, the Guardian ad Litem (GAL) supported the County’s Institutionalization position.

When the judge announced his decision, he concluded that the parents’ first-person testimony, from themselves, their son, and their pediatrician, far outweighed the county’s second hand testimony, and convinced him that the boy should be returned home with the ample home-based services which the county social worker testified were necessary.  The parents were elated and his father can proudly state that his service to our country in the armed services is that much more meaningful as the family celebrates a very meaningful Independence Day in their home today.

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For more information on how I can help you accomplish effective, progressive systems change e-mail Jeff Spitzer-Resnick or visit Systems Change Consulting.