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Youths with more significant I/DD have the fewest options for recouping progress lost to COVID

Their I/DD magnified COVID’s impact: an extra year of school is only real option for most youths in their final two years of eligibility .

Through Fix66, we have paid special attention to those youths with more significant developmental disabilities about to age out of school (e.g., they are no longer eligible for a public education according to state law because they turned 21 during the previous school year). One reason is because there is simply not enough time to deliver a benefit equivalent to the additional year of schooling offered to every non-disabled youth to mitigate COVID’s impact. This is on top of the barriers that all parents of children in special education faced in trying to use their child’s Individualized Education Plan (IEP) to address concerns about progress lost to COVID. These barriers were not simply unfair to these parents; they effectively constituted discrimination on the basis of disability.

But there is another important reason for focusing on these youths- students still in public school at age 20 and at 21 are also more likely to have a more significant level of Intellectual and Developmental Disability (I/DD) that not only made them more vulnerable to COVID’s impact, but also makes extending their eligibility for public school the simplest - and in some cases, the only - solution for them, and for us.

Only about 8% of 17 year-olds in special education stay in school through 21. This means that proportion of students for whom an extra year may be the only way they can recoup progress lost to COVID is small relative to the overall population of special education students.

Most of those who stay in school until they age out at 21 likely have significant levels of I/DD: The Pennsylvania Department of Education (PDE) places students in 1 of 12 special education categories based on their primary disability. Some of these special education categories are strongly linked to I/DD, including Autism, Intellectual/Developmental Disability (I/DD), Multiple Disabilities (MD), and Traumatic Brain Injury (TBI). While students can have conditions that potentially place them in multiple categories, those with more significant levels of I/DD would be categorized as such even if they could be considered for another category (e.g., Emotional Disturbance). .

The figure to the left captures the decrease in public school enrollment of special education students in Pennsylvania, contrasting those categories linked to I/DD with all others. Beginning with those who were 17 in December 2017, this table helps to track how many stayed in school each year through December 2020 (approximately their last year of eligibility). You can see that the number of students in I/DD-related categories dropped by 68% between ages 17 and 20 - from over 4300 to about 1400. In contrast, the number of students in all other special education categories dropped by 98% during this time - from over 19,000 to fewer than 500.

Our hypothesis was confirmed through analysis of new data received from PDE through a Right to Know request. These include the number of students who were 21 on December 1, 2021, and so includes some of the students who requested an additional year through Act 66. When we compare these figures to those for December 2020, it appears that almost all of the youths who elected to stay an additional year were in I/DD-related categories.

Why? Youths with more significant levels of I/DD are more likely to stay in school until they age out because they need more help to get ready for life as adults. This affects ALL of us. By definition, youths with I/DD simply struggle to learn many different kinds of skills: not just those traditionally important to school, but those important to life in general. Public school provides opportunities for intensive and specialized instruction that are simply unavailable to adults with I/DD. This instruction is critical if people with I/DD are to live and work as independently as possible; for every year they are in public school, they have at least 3 more years of life as an adult.

A public education can determine the path these youths take for the next 40-50 years of their lives as adults. Will they live in their own apartment with support, will they live with their parents, or will live in a more institutional setting? Will they be actively engaged and contributing to their communities as independent adults , or will they live in relative isolation, relying solely on government support? Their path could affect all of us: Helping them to live a more independent life can limit the need for government support, whereas placement in a more institutional setting can cost taxpayers $150,000/year.

Not all of these youths are the same, but the solution might be. Some of these youths may stay in public school until they age out because their I/DD is relatively more severe or because they have related physical disabilities. Others may have I/DD that is not as severe but that is complicated by challenging behaviors that make it more difficult to live and work independently. This can include some categorized with Autism. But in each of these cases, an extra year of public school is most likely to help recoup the most progress lost to COVID.

Youths with more significant levels of I/DD also share distinct educational needs that magnify COVID’s impact

  • They are more likely to have already exhausted other resources typically used by IEP teams to address concerns about progress. IEP teams can consider a range of changes to an IEP when there are concerns about progress; they can suggest summer school, add specialized professional support (e.g., speech pathologists, behavior specialists, .....), recommend 1:1 support throughout the school day, consider transferring into a more specialized program (perhaps offered through an Intermediate Unit), and so on. In fact, we would expect that most IEP teams concerned about the impact of COVID on any student’s progress would have considered at least one of the these options. But the IEPs of youths with more significant levels of I/DD are more likely to have already included these tools for addressing concerns about progress even before COVID struck - there are simply no tools left in the toolbox. Except for opportunities for instruction provided after school and on weekends, the only option left is to extend their time in school.

  • They are more likely to depend on the kind of intense community-based training that was profoundly impacted by COVID. Access to community-based training sites was limited long after school re-opened, magnifying COVID’s impact. And just as youths with more significant levels of I/DD typically need more time and support in school to make reasonable progress, they need more time in community-based training sites too. The result? COVID’s impact on these community training sites dealt a double blow to the progress of these youths.

  • They are more likely to struggle to adapt to disruptions in their routines, including those created by COVID. It is generally understood that youths with I/DD are also more prone to react when their routines are disrupted. This is especially true of those with Autism, and those with more significant levels of I/DD. This can increase a range of problem behaviors that will likely interfere with learning. In some cases, these disruptions can dramatically increase the intensity of aggression and self-injury, and resulting in placements in specialized programs that are often lifelong. COVID forced changes not only in the overall routine at school, but to almost every aspect of home life, testing the youth’s - and their family’s - ability to adapt.

  • Their struggles can continue post-graduation because they have fewer options as adults. Most typical youths and even most in special education have a range of opportunities available to them in their communities after graduation; they can get a job, they can continue their education, and, even if they continue to live at home, they can maintain a reasonable level of independence. These options are also sometimes available for those whose I/DD is relatively mild. But the range of options decreases rapidly as the severity of the I/DD increases - the programs are simply more costly, and the number of providers is more limited. Changes in state and federal regulations have led to restrictions or closures of some day programs that traditionally served those with the most significant levels of I/DD. And whenever these youths are not in a program, they may require supervision at home, magnifying the impact of gaps in their care.

These data help to anticipate the needs of about three-quarters of the transition-aged youths in special education who stay in school until they are no longer eligible, but understanding the needs of all other special education students (and how to mitigate COVID's impact) will require more study.

  • Not all students within the I/DD related categories stay in school until they are no longer eligible. While 50-55% of 17 year-old students with I/DD leave school before they age out, that number increases to 75% for 17 year-olds with Autism. Some students with Autism do not have I/DD and so may be better positioned to graduate on time (or soon after) with their typical peers. Thus, the needs of these students may be different from others who elect to stay longer in public school

  • About one-quarter of students still in public school at 20 years of age are in categories not typically related to I/DD. While this represents a small fraction (less than 3%) of the population of these students at 17 years of age, they likely have different needs and benefit from different options. And like their peers with I/DD, the clock is running out for public school solutions unless their eligibility is extended.

Most of the remaining 92% of transition-aged youths in special education would typically leave school before they age out of public education. This may create other opportunities to help them recover progress lost to COVID. But those aging out in June 2023 still face significant challenges

  • About one-half of those who will age out in June 2023 would typically elect to end their public schooling before then. Nonetheless, we have also advocated that an additional year be offered to these students, because more than one-half of these students are in categories associated with more significant levels of I/DD, and so are amongst those most clearly impacted by COVID. As we may outline in a future post, it is very difficult to develop and implement options rapidly enough to assure that these students do not lose opportunities.

  • Extending eligibility for public school by one year for those aging out in June 2023 also gives us time to understand the impact and pilot options for those graduating in later years. This creates opportunities to recover progress tailored to the needs of different groups that would not require extending their eligibility for public school past 21 years of age, or require parents to rely solely on an overly burdensome IEP process. Each of these options will require further study, perhaps through a workgroup of professionals and advocates mandated to recommend options and report progress to our elected representatives. We will share more ideas on a future post.



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