This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Tuesday, December 18, 2018

Marriage and SSI Benefits

Kitty's boyfriend recently asked us for Kitty's hand in marriage (sweet, right?). We said yes, but immediately afterward, I started worrying about what this means for Kitty's SSI benefits. 

Without her SSI, she won't have Medicaid. Without Medicaid, she won't be able to afford medications and doctor appointments (even with great insurance, co-pays are ~$100-150/mo).  Historically, she has never been able to maintain a full-time job long enough to be eligible for benefits for herself and in fact is currently unemployed. Her boyfriend cannot afford their apartment without her SSI benefits paying half the rent and his job doesn't provide health insurance. 

They can't afford to get married.

Talking to her about this was awkward. As far as I know, he hasn't asked her yet (I'm guessing it will be at Christmas) but I wanted her to be thinking about it before getting caught up in the excitement of a wedding. Ugh! I have to be "dream killer" once again.

By , Attorney

For SSI (disability benefits for low-income disabled people who did not pay enough into the Social Security system for SSDI), eligibility for benefits is never terminated simply by marriage. SSI benefits are available to unmarried and married disabled people alike. SSI eligibility is dependent on meeting the definition of disability and financial income and resource limits.

When a disabled person gets married (and lives with his or her new spouse), the problem is that the SSA will count some of the new husband or wife’s income as available to the disabled spouse. This is called “deeming income,” and the nondisabled spouse’s income that counts as available to the disabled spouse is called “deemed income.” 

If the nondisabled spouse makes a good or even fair income, the disabled spouse will likely lose his or her SSI benefits.

Deemed Income 
If the nondisabled spouse earns more than $375 per month in "countable income" (in 2018), the nondisabled spouse’s income will be deemed. The SSA has a very complicated formula for deeming spousal income. 

In a nutshell, if the spouses’ combined countable income (after certain sizeable deductions) is more than $1,125 per month (in 2018), the disabled spouse will be ineligible for SSI. 
{Doing the math: In 2018, if the nondisabled spouse works full-time making more than $9/hr then the disabled person will be ineligible for SSI! 

Determining Deemed Income
To estimate how much of your husband or wife’s income will be deemed to you, you can follow these guidelines.

{Be aware that "earned income" refers to "gross income" which is the amount earned before taxes and deductions and such, not the actual paycheck amount.}

First, deduct living expenses of $375 for each child from your spouse’s income. {Yay! N/A far.}

Then add your spouse’s income to any income you have. Do not include income from a spouse's IRA or company pension.

Then you are allowed to take certain deductions to give you your countable income for SSI, just as you would if you weren't married. Generally, for earned income, you are allowed to subtract $85 and then cut the remainder in half to come up with your countable earned income. You then add that to any unearned income.

What’s left after you've made these deductions is the spousal income that is deemed to you. You then subtract this amount from the SSI income limit for a couple (as if you were both disabled), not for an individual. The income limit (and monthly benefit rate) for a couple is $1,125 in 2018.

What remains, if anything, will be your monthly benefit. If the remainder is zero or less, you aren’t eligible for SSI.

If the remainder is more than the maximum federal SSI rate for an individual, $750, then you will receive only $750. 

Examples of Spousal Income Deeming
Here are a few examples to give you an idea of whether your husband or wife's income might make you ineligible for SSI.

Spouse’s salary $15,600 per year, no children
Your husband makes $1,300 per month by working and has no other income, and you have no other income and no children. About $607 per month of your husband’s income will be deemed to you [$1,300-$85]/2). You would be eligible for SSI, but you would only get about $518 per month, less than the federal maximum benefit of $750.

Spouse’s salary $30,000 per year, no children
Say your wife makes $2,500 per month at her job and has no other income, and you have no other income and no children. You have been approved for SSI. About $1,208 per month of your wife’s income will be deemed to you ([$2,500-$85]/2). Subtracting that amount from the couple’s SSI rate of $1,125 leaves you with nothing. You would not be eligible for SSI because of your wife’s income.

Spouse’s salary $30,000 per year, two children
Your wife makes $2,500 per month at her job and has no other income. You have no other income but you have two children (without an income of their own). About $833 of your wife's income will be deemed to you ([$2,500-$375-$375-$85]/2). Subtracting this amount from the couple’s maximum SSI payment of $1,125 would give you about $292 in SSI benefits.

Spouse’s salary $15,600 per year, two children
Your husband makes $1,300 per month through work, and you have two minor children living with you. You don't have any income of your own. Only about $233 of your husband’s income will be deemed to you. Subtracting this amount from the couple’s maximum SSI payment of $1,125 would give you about $892 in SSI, in theory. However, you can never get more than the $750 federal maximum for SSI (unless there is a state supplement), so your monthly payment would be $750. You can see here that because of your children, your husband’s income isn’t actually deemed to you at all.

Note that these are rough calculations for the purpose of illustration; the SSA's formula can get a bit more complicated, particularly if you also have earned income or you or your spouse also has unearned income, or any impairment-related work expenses. In addition, the calculations change in states that add on a supplementary payment to SSI. 

Both you and spouse receiving SSI
If both you and your fiancé (or fiancée) are receiving SSI benefits, the amount you receive will be reduced after marriage to match the couple's SSI monthly benefit amount – that is, assuming you and your spouse are still eligible for benefits. When both spouses are disabled, they must both meet the financial eligibility requirements for a couple. Their income is counted together, without using the deeming formula. If they make under the required amount, they would get the couples rate for SSI ($1,125 in 2018).

Call the SSA at (800) 772-1213 for help determining whether your fiancé or fianceé's deemed income is likely to make you ineligible for SSI.

Parent's SSDI and Marriage

Adults Disabled Before Age 22
An adult disabled before age 22 may be eligible for "child's benefits" if a parent is deceased or starts receiving retirement or disability benefits. We consider this a "child's" benefit because it is paid on a parent's Social Security earnings record.

The "adult child"—including an adopted child, or, in some cases, a stepchild, grandchild, or stepgrandchild—must be unmarried, age 18 or older, and have a disability that started before age 22.

Children who became disabled prior to the age of twenty-two are eligible to continue to draw SSDI benefits based on their parent’s earnings record. This is usually a higher amount than SSI (your child will only receive whichever is higher). So if either parent is retired or on SSDI look into this!

If you receive SSDI benefits under an eligible parent's record, getting married will cause your benefits to be terminated. 

This also applies to individuals who receive SSDI on the record of a deceased ex-spouse who remarry before age 50 if disabled, and before age 60 if not disabled

How We Handled It - 
Kitty was more focused on the fun part of planning a wedding than the marriage, so I convinced her to have a commitment ceremony instead of a legal marriage. She could still wear a wedding dress and have her fantasy Alice in Wonderland wedding- on a budget of course

Our state allows common-law marriages so I'll have to remind her to be very careful in how she presents herself.

More on SSI:
Getting SSI for Your Adult Child 

Saturday, December 8, 2018

RTC/ RTF Residential Psychiatric Care

What is Psychiatric residential treatment?

When an individual’s mental health treatment needs exceed the type of treatment that is available in inpatient care (such as psychiatric hospitalization), then residential treatment might be the recommended "next step up." 

RTC - Residential Treatment Center
RTF - Residential Treatment Facility
PRTF - Private Residential Treatment Facility
Whatever you call it, they all mean the same thing. 

What is the difference between RTC and inpatient treatment?

Inpatient treatment in a hospital unit is an extremely intensive treatment that offers strict 24-hour care and round-the-clock medical monitoring for individuals who may not be safe to be left alone. The goal of inpatient treatment is to stabilize acute symptoms, develop a treatment plan, and then hopefully get the individual into a long-term program. For instance, inpatient treatment programs and psychiatric wards are more likely to handle issues with acute suicidality than residential treatment programs. Once it is believed that the individual’s issues with potential suicidal ideation have been resolved, they can be transferred to a different environment, such as a residential treatment.

Residential treatment programs are typically not located in the psychiatric wings of hospitals but in more homelike settings.  The level of supervision is a step down from inpatient treatment in a psychiatric unit. 

  • Short-term residential treatment programs -  Short-term residential treatment programs provide very intensive but brief interventions. Often, these programs last several days to six weeks, depending on the intervention and the client's needs.
  • Long-term residential treatment programs - Long-term residential treatment programs may last 6-12 months. Individuals in these programs often have very severe issues, including significant psychological/psychiatric issues, substance abuse issues, and tendencies toward self-harm or harming others, etc.

    Treatment is highly structured, depending on the needs of the individual and the particular type of issues the program specializes in treating. For instance, some of these programs cater to individuals involved in the criminal justice system; some cater to individuals with psychotic disorders; some cater to those with personality disorders, etc.

    Comprehensive interventions are delivered in these environments that can include the use of medications and therapy as well as support services aimed at job-training, tutoring, speech therapy, etc. By their very nature, these programs must have modifications to treat individuals who have special needs. In some cases, clients may stay extremely long periods of time, or their stay may be permanent, depending on their level of disability.

    Therapeutic communities: Therapeutic communities are long-term residential treatment programs where clients and treatment providers live within the residence. These programs typically focus on re-socializing individuals as the major form of intervention and are designed to help clients develop attitudes, self-concepts, and behaviors that are constructive, allowing them to accept responsibility for themselves and lead productive lives. 

What do they do in an RTC?
Residential treatment programs provide a variety of different services, including medical management (medications from a physician and treatments from other medical professionals like nurses), group therapy, individual therapy, social support group participation, and other types of specific treatment interventions. For children, RTCs often have onsite school programs although some bus their clients to local public schools.

Residential treatment programs may specialize in the type of treatment they provide. Some facilities are basically "holding pens," some focus on diagnostics and medication, others are focused on DBT therapy or other types of therapy, job training... 

Most residential treatment facilities are not just for mental health treatment. Some also treat chemical dependency, substance abuse, and co-occurring mental health conditions. There are some that focus exclusively on neuropsychiatric treatment and a few specialize in children with reactive attachment disorder or other trauma issues. 

Most facilities either work with either children or adults, not both, some focus exclusively on adolescents.

Am I A Failure For Placing My Child in Residential Treatment? 
"We once told a person, who questioned our decision to place our son in residential treatment, that if he had a terrible illness or disease and we were told the only cure for him was to drain our savings account, fly to Australia, and see a specialist who could give us a cure, we would. In a heartbeat, no questions asked!
Why? Because we love our son. Our heart to help him heal, leads us to fight tooth and nail for him. We envision a day where he leads others, helps others, and gives back to the world in some amazing way. In order to help him get to that place tomorrow, we must fight today.
I’ve seen it in the eyes of a thousand parents I’ve talked to over the past few years- passion for their child. A belief that their current choices are not the end of their story. We’ve read it in the millions of words some of you have written in the comments on our blog or on our Facebook Page- a hopeless, empty, even terrified feeling over your child’s extreme behavior. But a willingness to fight. A belief in tomorrow. An “I’m not quitting” mentality.
Was the choice to take our son to residential treatment difficult? Absolutely! Did his choices lead him there? You bet! Does it mean we are failures for making that choice? Not in a million years! ~ Mike Berry

Is Residential Psychiatric Treatment (RTC) what your child needs? 

This is a great post about what RTC can't do (I don't necessarily agree with all of it. I do believe RTC can provide some solutions, but in general it is NOT going to solve all your child's problems).

How Do I Find Residential Treatment?

We've had quite a bit of experience with RTC's for our two children who are severely mentally ill and adopted with lots of trauma issues. The main thing to remember is that you have the right to "shop around."  for a provider and you have the right to work closely with them.  Here's what we do:

Prequel: Before you start the RTC process, you need to have documentation showing that your child NEEDS this level of care. For us, this meant repeated psych hospitalization, psychiatrist recommendations, therapist recommendations... The best thing you can do is Document! Document! Document! and keep it organized and easy to access.

  1. Check with your insurance to see what they'll cover and their requirements. Our kids were on state Medicaid and our state doesn't cover RTC, but we were able to get funding from the state we adopted through (because a friend had warned me to have it written into our adoptions subsidy). We had private insurance at one point and they had a bunch of hoops to jump through first (getting our child declared to have an SMI - serious mental illness; repeated psych hospitalizations and other outpatient stuff first... they would only pay for 4 days of RTC for my son because we didn't do all their steps.
  2. RECOMMENDATIONS! Ask your therapists, psych hospital social worker, psychiatrist, post on places like this... every RTC is different in what they provide and what they're good at, and of course your child's needs are individual too. Insurance companies will sometimes give you a list, but be sure to check it out yourself.
  3. Check the REVIEWS Check the State Licensing Board. In our state, it's called the Department of Family, Protective and Regulatory Services (or something like that). They have an ONLINE evaluation of ALL places they regulate (I use it for childcare facilities too). They record ALL deficiencies (this can be injury or even death of a child, cleanliness of the facility, record keeping...). I also enter the name of the facility online with the word review. I've found some things that way that didn't make it to the licensing reports.
  4. Have a written list of questions to ask of each facility.
    Some of our questions:
  • Do you take our insurance?
  • What age children do you take?
  • What is the average length of stay?
  • What does the typical client there look like (aggressive, mostly male, most of the kids are there for substance abuse, kids with primarily behavior problems....)?
  • What type of therapy do you provide?
  • How familiar are the therapists/ psychiatrists/ staff with trauma issues (PTSD, RAD/ attachment issues, Borderline Personality Disorder...)  Will they try to facilitate attachment to the family, or to themselves?
  • My child has unusual or special modifications/ accommodations _________ (blind, uses a wheelchair, sexually reactive, afraid of the dark, intellectually disabled, needs to be in small groups...), how would you handle these?
  • What are the education/ experience/ training requirements for staff?  What is the staff turn-over rate?
  • What happens if my child becomes violent or non-compliant?
  • How will you protect my child from other children's behaviors?
  • What happens if my child's behavior, health, or other issues change or escalate?
  • Do the kids attend the local public school or is there a charter school on campus?
  • How receptive are the therapist, staff psychiatrist to communicating with me?
  • How do you keep us (family) informed about what's going on with my child?
  • What type of communication and visitation policy do you have?  What does that look like?
  • In what areas are family expected to be involved (family therapy, part of the treatment team, staffings... ?)  In what areas are parents allowed to be involved?  
  • What kind of testing/ evaluations do you do?
  • What type of health care providers do you have on staff?  (psychiatrists, therapists, nurses, doctors...) 
  • Is the psychiatrist conservative or progressive with medications?
  • Can you accommodate my child's food/ seasonal allergies or other health issues?
  • What happens if my child gets sick or injured?  Where do they go if they need medical care not provided by the facility?
  • Can you get me a copy of the manual about how things work there (usually has info on visitation, dress code, level systems...) before we commit?
5) Check out the facility yourself. 
I went to a facility that during the interview process actually asked me these questions: 

First question:  
Random caseworker - "Our facility has a large minority population. Are you OK with that?" Me - "Yes, my son prefers this." 

SECOND Question (I kid you not!) CW: "Your son will be on a ward for aggressive boys (Bear was very aggressive due to his undiagnosed bipolar disorder among other severe issues). Are you OK with him getting beaten up every day?  My answer was NO!! by the way, and we did NOT take him to this facility, which has since closed its doors. 

Find a Residential Treatment Center (RTC)
A free resource to match RTC's with funding options and children's needs. I have not used their services but it came from a good source
Texas-based - Youth for Tomorrow

Info about what makes an RTC a good place.

Getting Funding for RTC

Where is your child adopted from? (International, Private Adoption, Domestic Foster Care, Out of State Foster Care...). This can affect your options/ resources.

Some Tips:
  • Be prepared for a fight. 
  • Your child's School District may help. If a child is in a residential program, the school system must pay the cost to educate them, but this is expensive, so getting them to admit your child needs care they cannot provide is often a battle that requires a special education advocate/ attorney.  
  • Private health insurance generally covers residential treatment, as long as you meet their requirements. For this, I highly recommend you document, document, document. Generally, your child must have a diagnosed Severe Mental Illness (SMI), and have stepped up through repeated psychiatric hospitalizations, intensive outpatient (IOP) aka partial day hospitalization(PDH), and of course have an RTC recommendation from a psychiatrist. Don't be surprised if insurance will only pay for a short period of hospitalization
    {We had a child hospitalized 6 times in a 3 month period, did 2 months in an IOP (Intensive Outpatient Program/ Partial Day Hospitalization), and had 2 psychiatrist recommend RTC, but was only covered for 8 days of RTC - even though she was still suicidal and the extensive neuropsychiatric testing (which this RTC specialized in) took 2 weeks!
    Luckily, in our case, the RTC actually covered the remaining week it took to get the testing finished. I know the RTC hoped to win an appeal to the insurance to be reimbursed, but they lost. Luckily for us (although unluckily for them), we were not required to reimburse them.}
  • Medicaid. If your child has Medicaid, some state's Medicaid covers RTC - many do not. In Texas, RTC is covered for children in foster care, but not for children who have been adopted from foster care, even if they are still on Medicaid. This is why many families are forced to do Joint Conservatorship.
  • Joint Conservatorship. Putting a child into foster care so the state will pay for mental health services. Second Time Foster Child by Toni Hoy gives a little more info on this. -  It is not an easy road, but a lot of states are working on improving the legislation that makes it legal. (Ex. currently, many states might pursue you for child abandonment if you refuse to pick up an unsafe child from the hospital). You may be responsible for paying for the child to be in foster care (ex. if you receive an adoption subsidy from that state, this may be suspended while the child is receiving support outside your home).
  • Other Programs. Every state is different. Ask around. Start making phone calls. Get online. Talk to your school district, adoption support groups, National Alliance on Mental Illness (NAMI), your government representatives, psychiatric hospitals, community support programs...  
  • State Representatives. Try contacting your state representative for help.
  • Private pay. Unfortunately, sometimes this is the only option. If you work directly with the RTC, they may be willing to work with you on discounted rates and/or financing for out-of-pocket treatment.
Foster Care Adoption:
  •  Adoption Agreement. When drafting an adoption agreement, you can request adding a clause to cover RTC if you are unable to find alternate funding. {We adopted children from another state's foster care and went this route.}
  •  Post Adoption Services.  Contact your adoption caseworker and keep calling up the chain until you get someone who can help you. Sometimes saying you have no choice but to relinquish (even if untrue) might help get someone to listen.

What happens if you don't pick up your child from RTC?
Sometimes our child is unsafe, to himself or others. Bringing the child home could endanger you and/or other members of the household but your funding is running out and they or the courts or some professional is telling you that you must take your child home or be charged with child abandonment.

Child Abandonment Laws
Laws regarding child safety and welfare, abandonment, and abuse vary from state to state, though in most states child abuse and child abandonment laws go hand-in-hand. In many states, child abandonment is considered a felony, even if the child has not been physically harmed by the abandonment. Other states classify child abandonment as a misdemeanor unless specifics of the crime suggest it should be raised to the level of a felony.

Criminal child abandonment is often defined as physically leaving a child somewhere, though it may also include failing to provide for the child’s basic needs, such as shelter, food, clothing, and medical care. 

Some things to think about if you're thinking about refusing to pick up your child from the hospital/ residential treatment facility (RTC/ RTF):
  • If insurance or other funding will only pay for a certain number of days and then their plan is to send the child home ready or not. I'd take what I could get and hope that the child showed his/ her "true colors" during the time he or she is there (you can also "poke the bear" - aka deliberately trigger the child while the child is in care so that others see what's going on at home where the child is no longer "honeymooning"). Acting Differently with Others
  • This also provides important documentation from an outside source that might help confirm that the child is unsafe to be back in the home. Document, Document, Document!
  • Can you refuse to take the child home until they have a working crisis plan/ viable option for how to keep everyone safe?
  •  Will he/ she be all sweetness and light and deny everything at an intake or when it comes time to discharge from the facility? Documentation might be able to counteract some of this. 
  • Do you have other children who will be in danger of being removed if you take the abandonment charges? 
  • Do you have careers that will be damaged if you take abandonment charges? (social worker, childcare provider, police officer, or other helping services)
  • Pick the child up and go straight to an acute care facility. This could potentially buy you 4-10 days - more time to find an alternate solution.
  • Are there other possible living alternatives? Group home, boarding school, with a friend or family member, staying with one parent while the other parent is with the other children (not ideal at all, but it works for some families)... try thinking outside the box.
  • Is therapeutic foster care an option? 
  • Look into Joint conservatorship with the state? Joint conservatorship is a little like placing your child into state foster care so your child will have access to mental health services but unlike fostercare, you have a lot more say in your child's life - like being able to work together with the state to find a facility that will work for the child.
  • What about facilities like Methodist Children's Home? 
  • Look for places that can help you find and access community resources. Unfortunately, finding programs can be difficult now that they're more decentralized.
    MHMR (Mental Health Mental Retardation) There used to be MHMRs in every state and most counties, but to be more politically correct or something, each one chose a new name. The advantage of the internet is that if you enter "MHMR and your county and state name" you will usually get the new name of your local MHMR. These programs offer sliding-scale mental health services including case management, therapists, psychiatrists.
    Many times national programs will have state and local branches.
    Parent to Parent ( Provides emotional & informational support for families of children who have special needs.
    NAMI (National Alliance on Mental Illness - An association of hundreds of local affiliates, state organizations and volunteers who work in communities to raise awareness and provide support and education that was not previously available to those in need.

If you have any suggestions or clarifications for funding sources - please comment and I'll add them to the list!

Thursday, September 20, 2018

Advocating - Some Notes


Presentation means a LOT. How you present yourself strongly affects how others respond to what you have to say.

"People decide in seconds whether or not to take you seriously,” says Margaret A. Neale, Ph.D. So the next time you are faced with a pushy doctor or a IEP “team,” sit tall with your chest open and your shoulders back. Research shows it’ll give you confidence and may even alter your body’s chemistry in a way that helps you feel less stressed and more powerful. ~ REDBOOK August 2015.
Physical appearance 
– Good impressions are important. I always dress fairly professionally. Not necessarily in a business suit, but usually a blazer (most of the time in hot pink or red!) over dark jeans or slacks. Something that makes me feel confident and attractive. I always wear makeup and do my hair.


– Stay calm and carry a big stick. I try to always stay calm, pleasant/friendly, professional, respectful, and show empathy for the stress the other person is dealing with (acknowledging that they have to balance the needs of many children and yes, this IEP meeting is running long). I also love to take my husband or a pushy advocate so they can get angry and demanding where needed (not that I can do it!) and I don’t have to lose my credibility as a competent, confident, rational professional – (unfortunately, that’s very easy to lose).


- I want teachers to know that I’m an involved parent (especially because my children tend to be prone to telling stories about how we abuse them and other reasons why they aren't able to do what's asked of them - ex. Bear told his teachers he was on a bender for all of Spring Break with his girlfriend in a city hours away. In addition to sending out the New School Year Letters at the beginning of the year, I also try to find time to do some volunteer work and get to know the teachers better.

We need people on our (and our child's side). If we want them to do something for us we need to be persuasive

  • Know exactly what you want, and keep meetings/ discussions on topic and focused on that goal. 
  • Leave out everything else (KISS - Keep It Short and Simple)
  • Think about it from your audience's perspective. 
  • What are their goals and motivations? (Getting home on time, keeping students safe, liability/ protecting the school, protecting their image of themself as a good person...
  • Say it in a way that will speak to your readers. 
  • Look for ways to make them want to do what you want them to do.
  • Make it clear and easy to do what you want them to do.
  • Use words that inspire enthusiasm or make them feel better about themselves. 

Instead of: 
"Forgive me for being blunt, but at the end of Bear's junior year in high school as I look at Bear’s declining grades and spotty attendance over the last semester, send yet another e-mail, leave yet another unreturned message with the Associate Principal and [BEHAVIOR PROGRAM] office, talk to yet another counselor or [BEHAVIOR PROGRAM] Aide, talk to yet another teacher about major projects Bear hasn’t even worked on… knowing that none of my repeated requests for assistance with Bear’s steadily declining behavior are being addressed, especially now that there’s little more than a week of school left… I’m feeling a little FRUSTRATED, to say the least. I am therefore officially requesting an immediate IEP meeting."
Try This:
"I am concerned that Bear is a danger to himself and others. I am officially requesting an IEP meeting."

Instead of:
"Kitty was sick a lot during the last 6 weeks. She's missing assignments and not prepared for the test tomorrow. You need to simplify or drop the missing assignments. Obviously, she can't take the test tomorrow. What are you going to do to fix this?"
Try This:
"I'm hoping you can help Kitty. She's missed a lot of classes due to serious illnesses. She's working hard to catch-up in your class (and all others) but unfortunately will not be ready for the test tomorrow. She plans to attend your scheduled tutorial hours after school. Do you have any additional ideas/ suggestions on how we can handle this?

How to Get Your Document Read - Persuasive Writing

As parents of special needs kids, we write all the time. Quick emails, formal documentation, requests/ demands for services or resources... how many times do you feel like they just stuck your document in the round file?

This post has a lot of info on how to get your document read - 

How to Get Your Document Read - Persuasive Writing

Document! Document!! Document!!!
Documenting can help protect you from false allegations, get services for your child, and make sure chronic issues get addressed. 

One thing I HIGHLY recommend to any parent dealing with children of trauma is to DOCUMENT, DOCUMENT, DOCUMENT!  You've heard me say it before... I'll say it again, and again.  It helps protect us, get services for our children, and refresh memories of past issues so you can see progress and make sure chronic issues get addressed correctly.

Ex. At an IEP meeting in November, the IEP team said Bear was doing so well that they wanted to move him full time from his structured, supportive special school to his home school (he'd been splitting his time between the two). It felt so wrong in every way, but I couldn't think of a single reason why not! 

Luckily, I took a minute to glance at my notes, and realized that only a couple of months before, Bear threatened a special ed student in the middle of class in front of everyone, took the girl's car keys, loaded her car with his friends and drove to a local fast food place, where he accidentally ran into their landscaping and wrecked the car (consequences for skipping class, driving without a license or permit, threatening a student, disrupting class, stealing and wrecking a car... none). The crazy thing was we ALL had forgotten this major incident!! (I think I was repressing it.)
Put It In Writing!
When dealing with police, CPS, getting your child services and treatment, trying to get people to understand and believe you... 
it's amazing what they'll believe when it's in writing, versus hearing it from the parent
- even if you're totally calm, logical, and professional when you speak
- even if they know you wrote it

Written Communication –

Letter to a Stranger - "When you write letters/emails, these letters will usually be read by strangers. Many important decisions about your child are made by strangers. What impression will your letter make on a stranger? Will the stranger see you as an angry, negative complainer? Or will the stranger see you as a rational, thoughtful parent who is expressing valid concerns? When you write letters, keep this "stranger" in your mind’s eye."

Document Conversations:

Especially when dealing with bureaucracy (like insurance or school!), try to keep as much communication as possible in writing (e-mails, notes, letters...).  If the person insists on phone calls and face to face meetings, take detailed notes and IMMEDIATELY type up a transcript afterward with as MUCH detail as possible. One of the main things to remember about documentation is to do it as SOON as possible after an incident.  Adrenaline and time really alter memories quickly. 

Include names, titles, agencies and affiliations, DATES and TIMES!  When you need documentation you can use these transcripts and they are MUCH more admissible then saying, "Well Ms. So and So said he was doing this a few weeks ago."  Once again, people believe what they see in writing, and it gives more credibility and authority to your statement.

Instead of: “I talked to someone about this a few days ago and she said… (something vague in support of what you want).

Notes: “21st of March at 2:15pm, I spoke on the phone to Ms. Smith, the head of the ARD Committee. We discussed Johnnie’s behavior during transitions times. Specifically, pushing Susie in the hall when she bumped in to him (3/19 at 1pm on the way to Music – observed by Mr. X), when lining up to go to recess running away from the teacher and found 20 minutes under Mr. E’s desk (3/17 from 2:20-2:40 – reported to Mom with a note in his homework folder on 3/18). Ms. Smith suggested that an option was to transfer Johnnie to Ms. Jones’ classroom 5 minutes before the bell rings so to reduce Johnnie’s stress during transfer times. Since many of these incidents were later in the afternoon, we discussed sending a high protein snack for Johnnie that could be given in the nurse’s office). We agreed that we would brainstorm other options and discuss this at the next ARD. Ms. Smith will make requests to Johnnie’s homeroom teacher, Mr. X the behavior aide and the assistant principal to bring options to the next ARD, which is on April 1st.”

Confirmation in Writing: Then I would email a summary to Ms. Smith (and copy everyone else that needs to know). “Dear Ms. Smith, I just wanted to confirm our discussion on 3/21/15 regarding Johnnie’s behavior during transitions. As agreed, you will contact Johnnie’s homeroom teacher, behavior aide and the AP regarding options that will help Johnnie access the least restrictive environment that meets his needs to successfully access his education. I look forward to receiving these options for my review before our next ARD scheduled on April 4th, so that we can discuss them and choose the best solutions for helping Johnnie be successful…”

Incident Report: Documentation protects you because many of our children will make false allegations and people (even ourselves!) forget or misplace information about incidents. This information may be needed to get the services our child needs.

To protect all involved, I recommend writing an "Incident Report" and keeping it in a log, sending it in an e-mail to the child's therapist or whoever might keep track of the info, and/ or add it to the child's timeline:

  • Antecedent - what was going on before the behavior or possible/probable triggers.
  • De-escalation - what we said/ did to try to prevent the event (if we had time) - calming techniques
  • Behavior/ Event - with as much detail as possible
  • Intervention - what we did during and immediately after the event - how we tried to calm the child, confrontation, redirection, distraction, sitting with them, time-ins, holding, rocking.., 
  • Follow-up - how you processed what happened with the child.  Injuries, damage, repairs needed/ made (emotionally and physically)... What consequences were given (if any)? Agencies contacted. Reports filed.

Documentation Goes Both Ways! 

Use their documentation to hold them accountable and get services. I often took psych reports with recommendations to places like my child's school and demand that they put these accommodations into place or our insurance company and demand they pay for programs/ therapy that met these goals (such as Hippotherapy or an expensive RTC that specialized in DBT therapy). 

I know that most of the psych eval recommendations were "cut and paste" crap, but I could still use them to my advantage.

  1. A two-prong treatment approach that includes both individual and family therapy/ parent training is strongly recommended. Treatment will be best geared to concrete, face-valid, short term goals establishing control and adaptive coping behaviors. At this time, it is important that therapeutic work address establishing a solid emotional vocabulary to help him directly express his feelings in an appropriate manner, developing emotional awareness...... blah, blah, blah...
I might use this recommendation to get:
  • DBT therapy versus whatever random talk therapy intern assigned to my child, because it specifically works on developing emotional awareness and vocabulary.
  • Forcing the school, adoption agency, or insurance company to find and fund an alternate placement for my child that can better help my child get the help he/ she needs such as finding an Alternate Placement (Alternate Placement and Crisis Plans) or an RTC (Finding and Funding an RTC). 
  • Even though this recommendation is talking more about therapeutic goals, I would probably use it to get IEP accommodations in the classroom that are focused on concrete, short-term (chunking) goals. Meaning, my child won't be handed a long-term project at the beginning of the year and expected to be able to complete it themselves. Instead, the assignment would be broken into steps and each step would have its own accountability.
  • I would also use it to get my child more emotional accommodations at school. Such as a quantifiable way for my daughter to let the school know she is experiencing anxiety or is feeling suicidal or like she wants to self-harm. Anxiety Scale. Crisis Plan.

Get ORGANIZED and keep EVERYTHING! E-mails, school behavior reports, transcripts, psych evals, documents. Get letters from his doctors, caregivers, therapists... Get these Organized and keep them updated (you'd be amazed how many times the school will say, "Well we don't have access to, or record of, that, let's wait until it can be found..." When you open up your 3 ring binder and pull out a copy of your child's behavior reports, that medical report (that you had them put in to their records at his last IEP meeting), your list of topics you want to be discussed at the meeting (I usually send out a copy of this via email before the meeting and ask them to make a copy for everyone!)... it keeps them from slowing down the process.

3" 3 Ring Binder - I take this everywhere - school IEP meetings, doctor/psychiatrist appointments, anytime I'm going to have to fill out a ton of paperwork requesting my child’s history, dates, and dosages.  I tend to keep these binders in my car in their own tote (more than 1 is too heavy!).

Primarily I use a 3" 3 ring binder with front and back pockets and a clear covering that I can drop things into. It's divided into sections with tabs. I add to the sections by putting the most recent information in the front of each section.

SPINE- Label with the child's name - since I've got 2 kids), but I also made sure they were different colors so I could recognize a child's quickly.
FRONT Drop in business cards so they don't get lost.
BACK Add a photo of the child. I've found some people in the IEP meeting forget we're talking about MY child, so even though my child is usually present I find this important. I have a beautiful crayon sketch done by my mom of my daughter. For my son I have a photo of him.
INSIDE (I generally try to keep things in chronological order - most recent items in front - unless it's a summary or needs to be in the front because we use it a lot)
  • Front Pocket - I keep a copy of the current IEP here since it's too big to fit in the binder sections.
  • In Front. Current Meds and Diagnoses page. I keep this one-page document updated and with me at all times.  I also keep a copy in my purse.  This summary has the child’s name, age, grade and where they go to school, IQ (if significant), current meds and dosages, current providers’ names and contact info (doc, therapist, pdoc…) and a list of diagnoses (with DSM V codes if possible) including, if needed, a brief summary as to how that looks in my child (ex. 294.9    Cognitive Disorder NOS (deficits in processing speed, working memory, executive functioning, and visual memory) - Cerebral Dysrhythmia (TBI) – right temporal lobe. - which controls memory, hearing, understanding language (receptive language), organization, and sequencing.
  • NOTE: It's especially useful to have the Meds and Diagnoses page on hand when I need to fill out a health form for school, admittance forms for a psych hospital or residential treatment center, new therapist or medical practitioner forms, to give to police officers and to child protective service workers (when we're reported for child abuse by a child who makes false allegations).
  • Blank ruled paper for notes.
  • TAB 1. Medical - (this includes copies of discharge paperwork from psychiatric hospitalizations), a current med list, a med list with all the meds they've ever been on (including when they took it and why it was stopped - if I know), immunizations, hearing and vision, and reports in chronological order of any significant medical issues (surgeries, test results and reports...), most recent well check summary…
  • TAB 2. Psych evals - (this includes the school version of a psych eval - called an FIE at our school). I like to use big paperclips to keep each report together rather than staples so they can be copied easily and so I can flip through quickly.
  • TAB 3. School - this has copies of important e-mails, IEP meeting invitations, printed out attendance, behavior reports, grades... I keep the most recent IEP in a pocket in the front of the binder because it's WAAAYYYY too big to fit in the binder. I only have room to keep a "summary" of important stuff in there (she's had 6 IEP meetings this year), so older stuff from past school years usually gets filed away unless it's really significant. A copy of the Procedural Safeguards (just so they don’t have an excuse to try to give me yet another one).
  • TAB 4. Legal - this is different per child. For my daughter we filed due process against the school (kind of like a lawsuit) so I keep this information here. Including recommendations of her therapists and psychiatrists regarding her school placement. For my son, it's more about his involvement in the judicial system. This would also be where we put Power of Attorneys, SSI paperwork, pretty much anything legal.
  • TAB 5. Adoption - just some legal documents needed sometimes because our kids were teens when we finalized, their names are different on documents from before their adoption (my daughter's first AND last name changed from her birth name).
  • TAB 5. Work - Now that my children have started working, we’ve replaced the adoption stuff and now have job search info, resumes, DARS information, pay stubs, Write Ups…
  • Back Pocket - odds and ends.
IN THE TOTE - A separate file folder for "current stuff” -  Stuff I haven't had time to hole punch, stuff that doesn't actually belong in the binders, info on programs we're considering, a calendar, "to do" stuff... whatever. A pencil bag with – pens, fidgets (for the kids), random stuff. A cheap hole punch. A photo “brag book.” A book for me to read (since I don’t have a smart phone!).


The most important thing I've learned is that my children need relationships and emotional healing WAAAYYYY more than they need an education.  Think about it, do you really want to raise a well-educated psychopath?

What Happens in School Stays in School. I'm a firm believer that what happens in school stays in school.  We have enough problems with relationships at our house; I don't need to fight the school's battles as well.  Advocate to make sure they get what they needed, but leave the rest to the school.  Family relationships are way more important, and you're not able to work on that if you're fighting about school.

Homework is not YOUR problem.  If I force my kids to do their homework then in their mind it becomes MY problem (meaning no longer theirs!).  Also, the school doesn't get an accurate picture of my child's issues (Like most kids of trauma, my children have severe executive functioning and memory issues, which means they canNOT get/stay organized. A lot of times my child understands the assignment at school but has forgotten it by the time they get home, or they can do something laid out very concretely, but in the homework, they are supposed to apply the knowledge they learned - which process to use - which they just can't do!). My son would act out to hide the fact that he couldn't, or didn't think he could, do his homework.

 I need the school to grasp and acknowledge my child's academic issues, and they won't get that if I walk my child through the homework. I do give my child adequate time to do homework and offer support and help (if they ask for it and remain respectful), but I will tell my child to put it down and walk away if it's obviously triggering him/her.  Maybe I encourage them to come back later.  Maybe not.  It depends on what's best for the emotional health of the family as a whole.

Key Phrases to Help Your Child:

  • "My child has a right to a Free and Appropriate Public Education (FAPE), this (issue) is preventing him from being able to access his/her education." 
  • "These behaviors are caused by my child's Disability. In accordance with the Americans with Disabilities Act (ADA), My child cannot be discriminated against/ punished/ reprimanded/ denied access to his FAPE for symptoms related to his Disability."
  • "My child has a right to be in the Least Restrictive Environment (LRE). The LRE for MY child to be able to learn and receive an education is in a smaller classroom with more INDIVIDUAL (one on one) attention. My child cannot learn in a large, chaotic environment like a general ed classroom therefore that is a MORE restrictive environment for my child and as such not APPROPRIATE."  

Wrightslaw - go immediately to and become familiar with your child's rights!!

New School Year Letters 
I write New School Year Letters at the beginning of the school year to alert the teachers and other people who deal with my children to the fact that I'm a concerned, loving, involved parent so if my children are doing something that seems "off" or inappropriate then it's probably related to their issues and not my parenting. ;)

These are ONE-PAGE letters that I send out every school year to teachers and people who will be working with my child.  This is a brief summary of my child since most teachers don't have time to read a child's whole file.  It gives tips on what works and what doesn't with my child, diagnoses and what they mean. 

Most importantly, the letter gives them my contact information and lets them know that I am an involved parent. Hopefully it will keep the teacher from making assumptions about our family, believing the crazy lies my child tells (hopefully they’ll be more likely to verify with me before they call CPS), and be thoughtful about the assignments they give (asking us to send baby pictures, talk to an older family member about your life history, family tree… write a eulogy for Tweetie - for my child who just got out of the psych hospital for suicidal ideation, memorize a monologue called Men are Slime - for my child with men issues, read the Outsiders and watch the movie - so many triggers I can’t mention them all!)….

New School Year/ Changing Schools
I've gone through this a couple of times. My best suggestion is to lay the cards on the table at the beginning (with as much in writing as possible because people believe what they read over what they hear). Be as clinical and matter-of-fact as possible. Tons of documentation to back you up but presented as briefly as possible. More of an outline so they can assimilate it quickly (they won't read more than a page at most) but making it obvious that there is documentation to back you up.

You want them to see you as a professional and an ally. You need them to come to you if something seems off rather than believe the children's stories.

If your children don't already have IEPs and you think they qualify then I would get the ball rolling on getting the school's testing done immediately. That helps too because if they understand your children aren't the average neurotypical students then they're less likely to believe any tall tales.

Above all, keep up the documentation on your end because with our kids it's usually not a matter of "if" it's a matter of "when" you'll be reported to DCFS.  

Document! Document!! Document!!! 


Finding Services - Many high schools and other organizations offer Transition Services/Trainings, including things like Transition Fairs to parents of special education students and children with special needs. Check with your school's special education department (many have an organization for parents), check with other local and government organizations, google it... It's different for every state.
Transition Inventory - This is specifically for the state of Texas, but some of the resources are national.
Getting SSI/ Medicaid for Your Adult Child