This is where we start a new journey, with your help

My baby started Pre-K today.

A special education classroom with maybe 6 kids in the class. He’s the only non-walker in the classroom. I don’t know much about his class yet so I don’t know if he’s the only child on the spectrum in the class.

Right now Durham Public Schools doesn’t recognize his Autism diagnosis because they didn’t see the “repetitive behaviors or social dysfunctions” during his evaluation; His one hour evaluation where the school psychologist sat at a desk and watched the other therapists interact with him.
I made sure to let his teacher know some of the things that he likes and doesn’t like. After I typed up an intro about him, I forgot to talk about his stimming so I hand wrote some things about that. Everyone stims. Of course, it’s more noticeable with people on the spectrum. I stim. I know what my stims are too. I wanted his teacher to understand that we don’t do “gentle hands” and we don’t have a replacement for his stims.



There’s a lot of uproar about Autism, Special Education, IEPs, DOE and so on right now. It’s for a good reason.


Vouchers? ESSA Accountability? The president saying “it’s a horrible thing to watch.” No. NO. NO!

If you are not aware of the harm these could do, please go read up on it.

As for the people saying, well isn’t it good enough that the president mentioned Autism. First of all, many presidents have mentioned Autism and then it quickly fades away after that.  Secondly, no. We don’t want lip service. We want action.

This is from the National Action for Medically Complex kids, an advocacy group.


The current administration intends to repeal and possibly replace the Affordable Care Act (ACA, commonly known as Obamacare). Repeal of certain provisions in this Act would have profound consequences on children who are medically complex.

10 Aspects of the ACA Critical for Kids Who are Medically Complex
1. The ACA allows all individuals to purchase insurance, without regard to whether the individual has a pre-existing condition or not. All children who are medically complex have pre-existing conditions. Repeal of this policy will make it difficult or impossible for these children to obtain insurance.
2. The ACA does not allow lifetime maximums or yearly maximums on insurance policies. Many children who are medically complex have periods when they have very expensive hospitalizations, particularly during inpatient NICU and PICU stays. It is very easy for just one stay to cost more than a million dollars, and these children very quickly accumulate bills up to the amount of their yearly or lifetime maximum. At this point, these children become uninsured.
3. The ACA allows children to remain on the insurance policy of a parent up to age 26. While not specifically geared toward children who are medically complex, this provision allows adult children with disabilities to remain on their parents’ insurance plans for a longer period of time. Many adult children with complex medical issues end up on Medicaid in adulthood, and this provision allows for either private insurance or dual coverage for a longer period of time.
4. The ACA mandates coverage of Essential Health Benefits for marketplace plans. These benefits include mandated coverage of DME and supplies, habilitative and rehabilitative therapies and services, and vision and dental care for children. These policies are especially important for children with autism and other conditions, who rely on habilitative therapies to improve their lives. Without these mandates, insurers will be able to drop coverage for therapies, medical equipment, enteral formula, home nursing care, and a wide variety of other services.
5. The ACA does not allow children with complex medical conditions to be charged more for their policies. The cost of policies is based only on age, tobacco status, and family size, not underlying conditions. Without this policy in place, insurers can charge children who are medically complex substantially more for their policies.
6. The ACA caps the amount of out-of-pocket expenses per year. Each policy must declare an out-of-pocket maximum that families or individuals are responsible for. After that, all expenses are paid in full. This component is exceptionally important for children with many medication copays, or children who see numerous specialists. Without this policy, families are responsible for exorbitant out-of-pocket costs, no matter how high.
7. The ACA extended funding for the Children’s Health Insurance Program. For families who are not financially eligible for Medicaid, CHIP allows free or low-cost comprehensive care. The ACA funded this care. Without this program, more than 8 million children will lose health coverage.
8. The ACA increases programs and funding for long term care, specifically the Community First Option. Many states have used this program and funding to provide children with disabilities personal care assistance and other services, with no waiting lists. While the program may continue, the additional funding for the program is likely to disappear.
9. The ACA guarantees the right to appeal an insurance denial. The ACA provided the ability to appeal any insurance denial, including an appeal to an external reviewer. Without this right, families will be dependent on insurance companies to make decisions about what should and should not be covered.
10. The ACA guarantees mental health coverage. Without this guarantee, children who require mental health or other behavioral services may no longer receive coverage for this care.


The current administration is proposing to eliminate Medicaid as a federal-state partnership and entitlement program, and turning it into a Block Grant or Per Capita Grant system.

Basic Medicaid Facts

Medicaid is currently a federal-state partnership, with the federal government paying at least 50% of the cost of each service billed. Currently, this match is unlimited, meaning the federal government will always match the amount states spend on Medicaid, no matter how many services are provided. If, for example, there is a viral outbreak and more services are needed, the federal government will always pay at least half the cost of all services. In order for states to participate in Medicaid, they must follow certain federal rules and regulations, including requirements for making certain populations eligible for Medicaid and covering specific services for children and adults.

A Block Grant or Per Capita Grant system transforms Medicaid to a primarily state-based program. Block Grants would provide each state with a pool of money based on past Medicaid spending, with few guidelines or restrictions. States could cover whichever populations or services they wish, and could limit services and quantities. Per Capita Grants provide a certain sum of money based on the number of Medicaid enrollees, which would have less of an effect on limiting populations covered, but would still allow states to limit services to certain populations, and control covered services and quantities.

According to the Kaiser Family Foundation, currently 72% of Medicaid enrollees are elderly, disabled, or children. 84% of spending is spent on the elderly, disabled, or children, and half of this spending, 42%, is on people with disabilities.

Effects of Block Grants on Kids Who are Medically Complex

1. The amount of federal funding for Medicaid would be reduced by about 30-40%. States lack the ability to make up the difference, and would be forced to cut services and reduce eligibility for Medicaid.
2. Medicaid home and community-based services waivers and the Katie Beckett option, which currently provide access to Medicaid for many children from middle class families, would likely be eliminated on the federal level. Instead, states would determine which populations they would serve. Expensive populations, like children who need home nursing care, would likely be no longer served by Medicaid or severely underserved.
3. Waiting lists for home services and waivers, which are already 2-10 years long in many states, would become even longer. With fewer dollars available, people with disabilities would far outnumber the small number of spots that could be funded by states.
4. States would likely restrict Medicaid to only certain populations. Since children who are medically complex are expensive, it is likely that eligibility would be restricted within this group. Some states may choose to cover none of these children, while others may only cover those who are low income, and others may only cover those with the most severe conditions.
5. The EPSDT mandate, which is the “package” of required services all states must provide to children in Medicaid, would likely be eliminated or weakened. States could choose what services they would cover and in what quantities. Benefits that are covered by Medicaid but not by insurance would be most likely to be eliminated or restricted, including home nursing care, enteral formula coverage, therapies, incontinence supplies, and durable medical equipment and supplies.
6. Many children who currently receive Medicaid based on disability or as secondary insurance would no longer have access to Medicaid in many states. These middle-income children would be seen as a lower priority, no matter how severe their disabilities.
7. Services children depend on to live in the community, especially home nursing care and personal care services, would no longer be available, or would be restricted severely in many states. As a result, children will be forced to live permanently in hospitals, nursing homes, or institutions.
8. If Medicaid coverage for both home care and institutions is restricted, many children may end up as wards of the state. While it is unlikely states would completely cut off Medicaid coverage for children living in nursing homes and institutions, it is likely that many families would be forced to relinquish care of their children in order to get them the healthcare they will need.


The reason why I am talking about these things on my son’s first day of school is because this impacts him. This impacts my oldest son. This impacts our family.

Medicaid is looked at so poorly. My son is on a Medicaid waiver for services. You probably think that we’re milking the system or something because he has Tricare as well. Let me tell you what, Tricare is no bundle of joy either. Without Medicaid it would have been a much longer battle for his AFO’s and Medical Stroller, because he is 3 and DOES NOT WALK ON HIS OWN.

Without the ACA, many families hit their cap within the first 3 months of the year. My son’s NICU bill was $400,000+. His monthly tube supplies are anywhere from 2-6k. His Rifton chair was roughly 6k. I can go find the EOB’s if you really want. The point is there are SO many complex families who won’t survive with lifetime caps. They just won’t.

My head has been buried in a Wrightslaw book in my spare time, because my children won’t make it in school without an IEP. They just won’t.  These are things we cannot change, yet we can make a difference.
I haven’t had a chance to call my Senators yet, but if you are reading this please consider doing so.

I want my son to succeed in school. I want him to like it. I most definitely don’t want to battle schools for the next 16 years. I plan on my kids being in public school, being productive members of society, and engaging in community events just like any other parent.

First day of school. Pic sent to me by the teacher because I have anxiety. 🙂 He’s so happy.

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