``FAPE for children with severe and multiple medical conditions that do not fit into a traditional classroom is not working. It is not possible with the budget and the structure of DOE alone to meet these needs and I have been repeatedly denied access to FAPE through several methods. ADA Access and Accommodation needs are easily denied. “Homebound education is a joke” and does not provide enough education and drastically and severely limits hours. Many parents who have chronic and complex and or severe needs Special Education students are not matched with a homebound educator because districts are not able to find one. This leaves parents at home with teaching and curricula provided by a Special Educator and they are not getting paid as Paraprofessionals. Lawsuits may not work…despite “due process”.
One parent is left without an Income, cannot earn for retirement and may wind up homeless at the age of 65. It is estimated over 80 percent of marriages when children with disabilities are involved end in Divorce. Every system in this country is working against disability. Ableism in Healthcare, Ableism in schools, Ableism in Medicaid, Ableism in DME, and if I forgot to mention a sector fill in the blank. These policies place one primary person as being a permanent Caregiver for life. Permament caregivers of disabled children are working as Care coordinators, Policy Advocates,Supported Living specialists, Therapy Assistants, and Paraprofessionals ((when schools let some kids fall through the cracks). Trying to get ahold of people through DOE at the State level is nearly impossible and often you are ignored.
The Medicaid Waiver program only recognizes the “Medical” side of things. No system exists to pay Parents of Severely disabled children a Living Wage and support the Full needs of the Individual through the lifespan. I propose that a training program be developed under HHS under ACF with CCDF and the Individualized Professional Development Portfolio. In this Professional Development Portforlio Parents/Guardians/Caregivers could be trained in Independent Living Skills Training to develop programs for their loved ones. These programs and the progress can be documented and tracked. Independent Living skills and Transition planning needs to occur throughout the lifespan. Parent therapy assistant training programs could be added to the same Professional Development Portfolio…These programs need to address various forms of therapy including: Visual Therapy, Spellers, OT, PT, ST. Often we are asked to perform exercises on our children and track our childrens progress and report back to a Therapist. Integrated Teaching Strategies where prior learned concepts are bridged into a “teaching” session. These strategies be taught in the portal. Customizing Education plans for different needs. Breaking down the different needs categorically will allow the training to be specialized and customized to the Individual. If a child has more “Low vision” needs vs another child who needs more help with Emotional regulation and Behavioral outbursts. Other trainings could involve Trauma informed and learning how to understand when to change a routine based on a Medical need. Medical needs may increase fatigue and contribute to Demand Avoidance. Having more documentation of the Visual, Sensory, Neuropsychiatric, Neuroimmune will better inform the development of the training needs of Parents, Providers in Head Start. Other ideas could be to evolve the group home models as small schools with 2-3 children in a small school. The small school would have a iLS specialist, would receive contracted services from a Special Education teacher who could coordinate with the iLS specialist, would have a caregiver who would report to a nurse, and a small school therapy assistant-cross trained in modalities specific to the needs of the individuals in the small school so they would also be learning from the same training as the parents who are providing this in home-in some cases where small schools are not available. The small school would allow a less overstimulating environment where not only care needs but learning needs, adaptive needs, and social/emotional needs are also met. Small schools could utilize access point adaptive, access, and accommodation matching. Best matches for small school placement would involve situations where a child who might experience sensory overload whereas the sensory overload would contribute to either behaviors or medical adverse events would be placed in a similar matched small school. This way access conflicts where denial of education service occur less. Due to a problem with finding enough providers a small school could have a Caregiver who is also a therapy assistant. This model would allow a Caregiver to be paid a possible living wage. Currently Medicaid Waivers are not capturing these unpaid skills and services that are being provided in the community. This is a tragedy. If anyone is reading this, I hope that it makes it all the way up to the Top and I am willing and ready to help make this a reality. This will increase Caregivers in the workforce. This will help prevent homelessness and hopefully improve the lives of those with disabilities. Other programs we need are Co-Housing Models where Parents can help lower rent/mortgage payments by having a nother person Co-housing who has received these trainings.