I know every parent out there, whether their child has an IEP or not, is asking this question right now. I will provide my framework for making this decision and hopefully you can use these steps to make your own decision for your kids.
The first thing my wife and I considered was the benefit of in-person schooling. Our son loves going to school. He has friends and enjoys seeing them. He never has anything other than a "great" school day, so this is a real point in the favor of going back to school. Especially given the fact that he is autistic and his social skills have exploded in the last year.
That said, we do not believe that his interactions will be anywhere near the level they were prior to COVID-19. He will see fewer kids, and the current in-person options in our county only offer 2 days a week. So we asked ourselves "is the risk of exposure to the coronavirus worth 2 days of limited social interaction?"
Our answer was no. That's one strike for in-person school.
The next thing we considered was the risk. As we all know, news on the virus, what it does, how fast it spreads, and what we can expect afterward changes daily. In fact, we are one of many families experiencing "virus news fatigue" to the extent that we limit what we read on COVID-19. However, our son has a compromised immune system. His pediatric neurologist was concerned prior to attending school last year before anyone thought COVID could be a thing. We know for certain he is against him going back now.
So that's another no, because we listen to our doctors. In-person school gets a second strike.
The third thing to consider is whether or not he can adapt to virtual school. We have been fortunate enough for our son to attend a reading program virtually for the last couple months. He has made great strides and the instruction was 100% virtual. So our question was does he need in-person instruction to learn?
No again. Three strikes and you're out, in-person school.
I'm not sharing everything here, obviously. Other families have other challenges. My wife and I are both fortunate enough to work primarily from home. Not every family has that option. My job is flexible enough that I can schedule my work around my son's education and my wife's work schedule. Not everyone has that privilege. You need to make your own decision for your own child. Our hope is that by electing for virtual school we leave more spots open for kids who absolutely need in-person instruction.
Best of luck making this decision. Call me if you want to discuss it!
Every socially aware company in the world has released some feel good supportive statement about BLM and ending racism. Many of these statements are simple pablum designed to sell something or promote some mythical value these companies claim to have had despite all evidence to the contrary.
This is not that statement.
I will detail what we have done, what we are doing now, and what we plan for the future to end systemic racism and ensure that Black Lives Matter.
The past
As an education advocate, I have witnessed systemic discrimination first hand. Not only have I seen rampant disability discrimination against children of every race, I have seen specific and targeted racial decisions made against individual black students. I have documented and reported incidents where entire groups of black students were targeted en masse. I have seen video of my African-American clients assaulted by SROs (School Resource Officers) in our schools for doing nothing more than raising their voices. I have watched and fought against unequal punishments at multiple schools in multiple school districts where black students were punished for the same actions for which their white peers received no punishment at all.
It broke my heart.
And after that, it made me angry.
So here is what I will do with my anger.
The Present
While I am an educated person, I do not and cannot know everything. As a white male, I have benefitted from privilege my entire life, even though at times I did not see it.
I know this.
I have always known it, even at times when it was uncomfortable to admit.
I am also reviewing my case files to see if there are instances where follow up actions are possible. My focus is always on the child first, and since I charge by the hour parents cannot always afford to deal with all the problems that exist. So to that end I plan to use the hours in my Advocacy Fund to help parents file additional complaints or write letters to address systemic race and disability based discrimination.
I say "race and disability based discrimination" for a reason. As an example, a non-disabled black student is 2 times more likely to be suspended than a non-disabled white student. A disabled white student is 3 times more likely to be suspended than his non-disabled white peers. However, a black student with a disability is 5 times more likely to be suspended than a non-disabled white peer. These kids are hit hardest by the exclusionary discipline system we currently promote in schools.
The Future
This is where we are not sure what to do. This is our company, and Kelly and I make the decisions. That said, we are not people of color. We need feedback and guidance. We will soon send out a survey to our mailing list asking for feedback on our proposed future actions. We will also post it here when it is done.
It is important to us that we include the voices of those we represent in our actions. As the autistic adults as A.S.A.N. proudly state "nothing about us without us." We are willing to be guided by the voices of those who experience racism every day. If we don't listen to the folks who are affected then we will never solve the problem.
Right now we see a few major issues that need to be addressed.
Remove SROs from schools.
Extend the reporting time for Office of Civil Rights discrimination complaints from 6 months to 2 years.
End exclusionary discipline practices in schools.
End restraint and seclusion in schools.
These are the first 4 that come to mind. We will expound on them in future blog posts so folks can understand why they are important. However, we are open to other ideas.
Help us be the advocates our community needs, because if black lives don't matter then no lives matter.
Howdy! You’re reading this because you probably received one of our masks and have some questions. The video above will answer most of your questions, but read on for anything it might not answer.
1. Your mask can be washed in the washing machine.
We prewash the fabric we get so it should not run or bleed once you get it. That said, if you want to wash it on its own first that probably isn’t a bad idea as I purchase the fabric. I don’t make it.
2. Your mask will fit a filter.
There is a 3″ gap at the top of your mask that you can use to insert a filter. Filter materials vary, but many folks use either coffee filters or shop towels. I’ll make a video showing how to insert a filter later, but for now just know that you can insert a filter if you like.
3. Your nose piece is replaceable if it wears out or falls out.
Just turn your mask inside out and look on the back side of the masks. There is a seam sewn in the middle of the mask. Lift up the flap and insert the nose piece through the middle section above the seam. I use pipe cleaners for the nose pieces, but a small piece of low gauge wire works too.
4. If your mask is too big:
You can tie off the elastic bands to make them smaller.
5. If your mask is too small:
You can make some extra elastic lengths and tie them in to the existing elastic. Hair bands make great extenders.
That’s all for now. Stay tuned here as I’m sure this will get updated frequently.
When the pandemic quarantine started, having everyone at home was a bit of a shock to both my wife and me. Add to that the fact that we were both still working while our son was out of school and you have all the components necessary for disaster. So one of my first thoughts in mid-March was “what am I going to do to keep my son engaged and interested?” That was followed quickly by “how do I keep my somewhat germaphobic son from being afraid and anxious all the time about the coronavirus?
Then I read about crafters sewing masks to help first responders, and I had an idea. Rushing to our basement, I discovered several yards of Thomas the Tank Engine fabric we bought years ago for a long forgotten project. Thinking out loud to my wife, I said “maybe if we make masks out of this material, our son will wear them and feel safe.” She enthusiastically agreed, so she got our sewing machine back from her parents and we started sewing. This was around the end of the first week of April.
So y’all have some history on why I thought of this, I learned to sew as a child. My dad taught me, and his mom had taught him. My dad grew up on a farm so learning skills was how you survived. My grandfather on my mom’s side also taught me a bit after my dad got frustrated. This frustration would normally happen after I bird-nested the bobbin thread because I sewed too fast. Apparently I didn’t follow directions well and rushed through things as a kid. Nobody who knows me now would ever guess that, am I right? So I have this small family tradition of sewing, and I felt I could teach my son to sew and carry it on another generation. Plus Kelly’s mom sews as well, and apparently that is a learned skill in her family too. So even better as we get to combine family traditions into our shared heritage.
That said, the devil is in the details. I have not used a sewing machine since I was in my 20s, and I turn 50 this year. It took a few days of reading the manual and attempting to sew masks before I really got back in the swing of things. However, I did learn how to do some things that had eluded me before, like how to raise the bobbin thread and backstitch quickly without screwing everything up.
Also, the mask types were confusing. I wanted a mask that I could insert a filter into if I chose, but many of them doubled up the fabric so much I broke my needles. Kelly and I researched and tried several patterns before we found one that I could repeat quickly with the needles intact. That took about a week and a half as we cycled through pattern after pattern and broke needles left and right. However, we finally got it right and were able to produce our first masks to give away on April 19th.
Along the way we talked about why we make masks, why they are important, how they keep people safe, and why we were giving them away. We have always taught to Raymond about volunteering and giving back to our community, as that is a family value. It’s also how Kelly and I met, so we both believed in it prior to getting together. This project was another opportunity for us to live our values and help other people. At first our community was family and friends, but as we make more masks we are expanding our circle of giving.
The most amazing thing is how focused and motivated about mask making Raymond has become. Every day he asks me when we are making masks, and I never get an argument when I call him to start working. He has learned to iron, cut materials, and sew, although he is as impatient as I apparently was as a teen. But the best thing is that it gives him joy to make and give these away. So by expanding our giving circle we are also expanding our joy.
Kelly is still learning to sew, but her core competency is managing operations, so she searches out new fabrics, finds discounts, and helps keep the process moving quickly. She also manages to find discount codes like a ninja, which helps us as we are doing this on a shoestring budget.
We came up with the name today. M.A.S.C means “Making A Safer Community” because we are helping folks not spread germs, which helps everyone around us. As of this afternoon we have made and given away 47 masks, and we will probably make 5-7 more tonight. We have spent a fair amount of money on fabric and supplies, but its worth it for what we are able to give away.
So there are two things we need. First, we need to know folks who need masks so we can get them covered. If you know of anyone local that needs masks, let me know. We will go into detail in our next post, “The Care and Feeding of your M.A.S.C.” but we use clean cloth and wash our hands. We don’t have the wherewithal to mail masks out yet. We can donate some to local nonprofits, but we produce 5-7 masks a day max so we can’t outfit an army overnight.
The second thing we need is supplies. We have bought some fabric and geared up with needles and thread, but we can always use more. If you want to make a cash donation of some sort so we can buy more material, email us and we will give you our Venmo, PayPal, or Apple Pay info. We are not a nonprofit though, so it won’t be tax deductible. If you want to donate fabric or other supplies and are local, message us and we will figure out how to link up.
In closing, we are overjoyed at how this project has brought our family together. We all sit around our kitchen table in the evenings making masks. We take turns picking songs to play so the soundtrack always changes, but it is family time that is different than anything else we have done. If you want to do this yourself and need some guidance, hit us up. We are happy to share what we did in hopes it will work for you. In the meantime, we will keep making masks so y’all let us know if you need them. Stay safe and wash your hands!
The text below is a transcription of what I announced on Facebook Live. It may not be exact, but the vast majority of the content is the same. Enjoy!
Your fearless advocate in his home office.
Hello everyone. Welcome to my first live announcement of 2019 for Nelson Advocacy. This is a big one for me, because one of my major goals in starting this business was helping folks who cannot afford me. Today I can do that, at least for one lucky family.
Starting last February, I
raised my rates. In doing so, I dedicated $5 of every hour I worked to place in
reserve. I did this in order to prepay for services that I could then give to
families that could not afford me.
The reason this is important
to me is that I have been in that family. For years we spent all of our time
and money focused on our son, learning about his disability and advocating for
his needs. We drained our savings, cashed out retirements, and ran up credit
cards getting the things we felt he needed. I know how expensive this process
can be from experience, and I wanted to be in a place to help someone else
avoid some of those costs.
Today I’m happy to announce that I can do that. I am offering the community at large 14 hours of my time! That covers my initial 10 hour bundle as well as one additional meeting! I would typically charge $700 for this service, but since my community has supported me I am now able to offer this to you.
The rules are up on my
website, NelsonAdvocacy.com, but here is
the short version. To qualify you must need advocacy services for a child with
a disability in public school under the age of 22, your family cannot earn more
than $100,000 per year, and you must be in the Fredericksburg area.
Specifically you must be in Fredericksburg City, Spotsylvania, or Stafford.
Another component of this
program that I chose to include was the ability to give back to my current clients.
In this business as in my real estate business, I believe that loyalty is a two
way street and that if you invest in people, they also invest in you. I’m not
interested in customers, I’m interested in community. To that end I have two 4
hour scholarships to give to my current and past clients. In order to apply for
this, the only rule is that you have to be a current or past client of mine and
you have to use my services within the 2019 calendar year. Email, call or text
me if you want to be considered for this and I will add you to the list. This
will be a random drawing, probably also done on Facebook live so folks can bear
witness. I have a few more hours to give away, but I’m going to save them until
this spring.
There is a bit of less good
news for my clients. I find that I have to raise my meeting rate from 3 hours
to 4 hours. Unfortunately, school systems have been taking more time to meet this
past year than in my first year, and while I have not been charging retroactively
for that time I now find I need to compensate my fees for it. However, the same
rule applies as before in that the meeting fee includes our interim
communication so I don’t have to track time for every email or short phone
call.
Finally, please like my Facebook page and sign up for my newsletter. I’m committing to quarterly newsletters this year, so I’ll have a January, April, July and October edition for your edification. Sign up on my website with the newsletter sign up button. My facebook page is facebook.com/nelsonadvocacy. And if you or someone you know needs my help, call or inbox me. I still do a free half hour consultation for folks, and I promise that you will get something helpful even if you don’t hire me. This post is public so feel free to share it. I look forward to your responses, and have a great day!
I sent this out to my current clients a few weeks ago, but it has valuable information for anyone thinking of hiring us to help advocate. Enjoy!
First off, let us wish you a Happy New Year. 2018 promises to be a productive year for Nelson Advocacy and we want to start the year by announcing some changes. If growth is anything like 2017, it will be a roller coaster that will wildly benefit my clients, their families, and their education.
The primary announcement is that we are raising our rates effective February 1st, 2018. Our current $25 per hour fee is not sufficient to cover all the costs incurred running this business. We are sad to raise our rates, but also happy that it will enable us to offer our clients a higher level of service. There is also an added benefit to it detailed below.
In raising rates, we will also institute an hourly billing system. We previously tracked hours on a spreadsheet, which was not very effective. Now we have set up hourly tracking software and will be able to easily generate reports. The benefit to my clients is greater transparency and more accurate billing.
Another benefit is professional education. We spent most of our profits last year on continuing education to make Ray a better advocate. That paid off quickly for several of our clients. We will do more of that this year, which will directly benefit how well we can advocate for you going forward.
The third benefit is that starting February 1st, 2018, $5 for every hour we work will go into an advocacy scholarship fund. One of the things we noticed was that many people who need our services the most cannot afford them, and we cannot abide that. So now when we work we will also be setting aside money to help folks who do not have the means to hire us. Our clients are part of that, so you know hiring us is also helping another family who desperately needs help and can’t afford it. We will announce how it works once we get a minimum balance of $500 in the account, but it will have income qualification standards among other things.
Looking ahead, we may look at partnering with a non-profit this year to create a tax-deductible scholarship fund. We are also looking at ways to consult and advise local educators to help create better inclusion opportunities. Finally, we will be attending more vendor fairs this year and developing an “Education Advocacy 101” curriculum to help teach clients how to better advocate for themselves. If you have questions or suggestions feel free to email or call us. We are looking forward to a fabulous 2018!
I often get asked about the IEP being a contract, and until recently I thought it was a binding contract between the parent and the school. Unfortunately I have some bad news. I really hate to break this to everyone, but its the truth. The IEP is not a contract.
I know, I know. This contradicts what we have all been told as parents and by some well meaning blog posts on the internet, but after lengthy research and discussion with over a dozen seasoned special education attorneys, I can safely say that the IEP is not a contract.
I will explain some of the reasons why, although I am not an attorney so I will not dive too deeply into what I cannot professionally comment upon. However, I am also a REALTOR so I do have some basic contract law knowledge from that profession, and even I can see it fails to meet some simple contract tests.
This Wikipedia page on contracts covers contract basics, although it can get much more complicated. However, even using the simplest version on that page means a contract requires offer, acceptance, consideration and mutual intent. I’m not going to speak to mutual intent, and offer and acceptance exist in the IEP process. However, the real problem is in consideration.
The school is offering you something of value, but you as the parent are not. Additionally, the school is not voluntarily offering you something of value, but instead offering you something of value that it is legally required to offer. These two factors negate the “consideration” part of the contract process, which somewhat disqualifies it from contract status.
The simplest explanation I have heard, though, is that the IEP is not a contract because Congress consistently chooses not to make it one. Additionally, the terms and conditions are by statute, not agreement, which is significantly different from a contract to purchase a home or a car. Normally you agree to things that happen if someone defaults or fails to do something, but in the IEP world that is all handled by statutes and regulations.
“Contradicting these guidelines, the federal IDEA does not contain any reference to contracts. The Massachusetts Department of Education’s lexical choice, as it turns out, is technically inaccurate. An IEP is not a contract in a formal sense. It is simply a statement produced by an educational agency at the end of a formalized collaborative process, defining the appropriate set of special education services for a given child. Services are technically not a matter of contractual rights, but are educational entitlements conferred by law to each eligible child on the basis of stated criteria and with due process guarantees. The IDEA contains elements of a pseudo-contractual nature, such as parents’ participation in the IEP drafting process and parental consent as a condition precedent to the implementation of any IEP provisions. But such features are increasingly common in the relationship between citizens and administrative agencies and are signs of collaborative governance rather than traits of contractual dealings in a technical sense.”
Finally, I did read a snippet someone posted about IDEA 1997 specifically stating the IEP did not create a contractual relationship, but I was unable to confirm that in a quick scan of the bill. So instead I went to the full text of IDEA 2004 and read through section 614(d) which governs the IEP document itself. The IEP is consistently referred to as a “statement” or, more accurately, a series of statements about the child and the child’s education, services and progress. Nowhere that I could find is the IEP referred to as a “contract” in the law. The contract language in the act that I found was specific to the LEA being able to contract services or meet needs with outside vendors.
I hope that clears things up. Just because the IEP is not a contract does not mean it cannot be enforced. It is still a legal document with parental and student rights spelled out. Feel free to contact me if you want to discuss it further.
I spoke with a friend last week who had a son in crisis. If you don’t know what crisis for kids with disabilities looks like, be thankful. Aggressive behavior, hitting, and destruction of property are all too common in the disability world. Since she had her hands full, I did some research for her and found these resources.
First off, I tried REACH. REACH is a statewide program specifically for adults with intellectual disabilities and developmental disabilities. That means autism, downs syndrome, and a host of other challenges. I went to their website (http://www.dbhds.virginia.gov/individuals-and-families/developmental-disabilities/crisis-services) and found my area. According to the website, I’m in area 1. However, after talking to a very helpful woman, I discovered that my local community service board, RACSB, has their own crisis line and services. She did also tell me that REACH can handle children with ID/DD as well, depending on your area. If your child or adult has a tendency toward aggressive behavior, I would keep this site bookmarked and make sure you know your area. They can be called in lieu of 911 for guidance.
Next I called the RACSB childrens crisis line at 540-373-6876. Again, a helpful woman was happy to answer my questions. They do have 24 hour service, although after hours it is an answering service that will contact whomever is on call. They do give priority and have personnel trained for kids with ID and DD issues like autism, downs syndrome, etc.
The most interesting question she answered was about calling 911. Her advice was to call 911, specifically because here in Spotsylvania we have a sheriffs department who is familiar with and has been trained in first response to this sort of crisis. I don’t know the readiness of other sheriff or police departments, so I would advise you reach out to them personally and find that out. However, if you are in danger and your only option is 911, then you should call them. The process here is not to arrest and detain, but to de-escalate and provide secure transport to the nearest hospital for admission and medical evaluation.
This is one of the scariest parts of the disability experience, so it pays us to be vigilant. Feel free to message me if you need guidance in your area. I’m not an expert in all areas of the country, but I may be able to point you in the right direction if you’re lost. I hope this information helps.
Hello! This is just a quick introduction to me and my business. I will expound and add more as time goes by, but this will give you a short introduction to me.
I’m in my 40s and the parent of an autistic teenager. My start in advocacy was beginning to advocate for my son at age 3. In the last 10 years I have acquired a great deal of knowledge and honed my negotiating and leadership skills by advocating for my son and other kids in the Fredericksburg area. Its a labor of love for me, as my primary job is still as a REALTOR with Nest Realty in Fredericksburg.
