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!

Thursday, January 24, 2019

Overlapping Diagnoses in Children


Here's the link to the original document
Overlapping Behavioral Characteristics Chart
I thought this was a very interesting chart of the overlapping characteristics of the different diagnoses. We see a lot of overlap in behavioral characteristics in our children who have multiple diagnoses. 

{This chart was designed by a group with an FASD background, which is fine, and I agree that kids with FASD usually have all of those characteristics. I just disagree with the fact that they don't also have RAD checked off on most of the characteristics. I realize that how RAD affects children is different and that they may not check things off if the child only acts that way with certain adults (meaning family), but NONE of these were checked for RAD?!!! }

Multiple Diagnoses in Children

Comorbidity
Children with trauma issues usually have more going on than just one issue - attachment disorders, physical and sexual abuse, PTSD, RAD, bipolar disorder, ADHD, FAS/FAE...

Caseworkers will not or cannot tell you all of what caused these issues, and often symptoms overlap and appear to be other things. For example, I don't think I've ever heard of a child with RAD who didn't also have Complex PTSD. 
The simultaneous presence of two (or more) chronic illnesses or conditions in a patient.
"Comorbidity does not mean the simple addition of two illnesses that independently follow their usual trajectories. The simultaneous presence of two or more diseases will worsen the prognosis of all the diseases that are present, lead to an increasing number (and severity) of complications, and make the treatment of all of them more difficult and, possibly, less efficacious.
What is worse is that [at least] one of the comorbid illnesses is often overlooked. This is particularly true for mental illnesses which are frequently comorbid with physical illnesses. Non-psychiatric specialists and general practitioners are usually focused on the illness about which they know a great deal and which they wish to treat, often missing or underestimating the importance of mental disorders that might also be present."  
~ Comorbidity of Mental and Physical Diseases: A Main Challenge For Medicine of The 21st Century

Multiple diagnoses in children frequently lead to overwhelming frustration and a lack of services/ accommodations. The child's "Care Team" - medical and mental health providers, education professionals, therapists, case managers, parents' supports... each tends to focus on the area(s) where they have experience and training -frequently not understanding the child's other diagnoses and, more importantly, how those diagnoses interreact with each other. 
Each diagnosis not only has its own associated behaviors and behaviors that may overlap with the child's other diagnoses but the behaviors and symptoms frequently interreact and intensify minor or more serious issues exponentially.



For example, Kitty has many diagnoses - ADHD, C-PTSD, Cerebral Dysrhythmia (brain injury/ damage), well below average IQ (low average verbal IQ, well below average memory, lower extreme range processing speed), bipolar disorder, GAD, FASD, BPD, emotional/ developmental age approximately 10 years below her physical age... 
Most people on her "care team" recognize and/or have experience with only 2 or 3 of these diagnoses/ behaviors/ symptoms. They have no understanding of how her different diagnoses interreact with each other or how that interaction can change on a minute-by-minute basis based on what all is going on {Spoon Theory}.  They see my friendly child who "presents well"  and make assumptions as to what she needs and is capable of. (They also tend to assume I am an overemotional, overbearing parent with Munchausen by proxy).
{Unfortunately, many people in a child's life believe that telling a child the truth about his or her abilities and skills will damage his/her self-esteem. Personally, I believe that if you tell a child that he/she can do and/or be anything he wants to be and then the child fails, then the child assumes that the failure is his or her fault. {Dream Killer} 
I think children need encouragement to find the things that they enjoy but be gently directed away from unrealistic goals. A blind child who wants to be an artist might be guided away from watercolors and instead encouraged to become an amazing Sculptor or discover an interest in becoming an engineer.]

One theory that explains why so many children have multiple diagnoses. People with mental illnesses are usually attracted to those who "get" them (meaning they understand and sympathize with the mentally ill person's issues - usually because they have personally experienced it. Kleenex Girls). 
People with issues are attracted to people with issues - creating babies with issues.
People with "issues" don't always make the best choices - which can lead to abused/ neglected children with genetic predispositions toward mental illnesses, who may have been "pickled in toxic soup" in utero (alcohol/ drugs/ adrenaline and anxiety hormones...). The combination of genetics and environment often leads to these children ending up in foster care.

People feel most comfortable with situations and people we know. My kids spend an inordinate amount of time trying to recreate the chaos they grew up with because those are the conditions they understand and know how to operate under. They know what to expect (even though that's usually abuse and more chaos)





DIAGNOSES

RAD and Trauma
I don’t believe the Overlapping Behavioral Characteristics Chart is entirely accurate (for example, it doesn’t include “Difficulty seeing cause & effect “ as a symptom of Reactive Attachment Disorder (RAD) when it most definitely is a very common one (Infants learn cause and effect from their primary caregiver. RAD is caused by the absence of the primary caregiver – whether emotionally or physically. Therefore most texts list this as a common symptom of RAD). 

I suppose it does depend on at what age the child developed RAD. For example, if the child was as an infant and the primary caregiver did not react consistently when the child cried (such as sometimes feeding the child or changing the child's diaper, sometimes ignoring the child, and sometimes beating him or her), then the child might not have learned "cause and effect." Whereas if the trauma began later then hopefully that stage would already be successfully completed. (Katharine Leslie Seminar - Infant Development)

Reactive Attachment Disorder Behavior Characteristics

  • acts cute or charms others to get others to do what my child wants.
  • often does not make eye contact when adults want to make eye contact with my child.
  • overly friendly with strangers.
  •  pushes me away or becomes stiff when I try to hug- unless my child wants something from me.
  • argues for long periods of time about ev.ry.thing., often about ridiculous things.
  • has a tremendous need to have control over everything, becoming very upset if things don't go my child's way.
  • acts amazingly innocent or pretends that things aren't that bad when caught doing something wrong.
  • does very dangerous things, ignoring that my child may be hurt.
  • deliberately breaks or ruins things.
  • doesn't seem to feel age-appropriate guilt when my child does something wrong.
  • teases, hurts, or is cruel to other children.
  • seems unable to stop from doing things on impulse.
  • steals or shows up with things that belong to others with unusual or suspicious reasons for how my child got these things.
  • demands things, instead of asking for them.
  • doesn't seem to learn from mistakes and misbehavior (no matter what the consequence, the child continues the behavior).
  • tries to get sympathy from others by telling them that I abuse, don't feed, or don't provide the basic life necessities.
  • "shakes off" pain when hurt, refusing to let anyone provide comfort.
  • likes to sneak things without permission, even though my child could have had these things if my child had asked.
  • lies, often about obvious or ridiculous things, or when it would have been easier to tell the truth.
  • very bossy with other children and adults.
  • hoards or sneaks food, or has other unusual eating habits (eats paper, raw flour, baker's chocolate, etc. )
  • can't keep friends for more than a week or so.
  • throws temper tantrums that last for hours.
  • chatters non-stop, repeatedly asks questions over and over about things that make no sense, mutters, or is hard to understand when talking.
  • accident-prone (gets hurt a lot), or complains a lot about every little ache and pain (needs constant bandaids). (Even though he/she may not complain about serious injuries or illnesses) {Psychosomatic "Illnesses"}
  • teases, hurts, or is cruel to animals.
  • doesn't do as well in school as my child could with even a little more effort.
  • sets fires or is preoccupied with fire.
  • prefers to watch violent cartoons and/or TV shows or horror movies 
  • was abused/neglected during the first two years of life or had several changes of the primary caretaker during the first several years of life. (This can include multiple or extended hospitalizations)
  • was in an orphanage. 
  • was adopted  (It is possible to have RAD even if the child was adopted at birth - if the child was "pickled" in utero with drugs, alcohol, and/or stress hormones...).

Triggered Behavior Characteristics
A child whose past trauma is triggered will likely exhibit several behavior characteristics/ symptoms/ signs at one time, and they may be even more exaggerated than usual.  Kids can be triggered by sights (violent TV shows, for example), smells (fried potatoes), sounds (a full laundry basket falling to the ground, a siren, a fire alarm at school, or a loud/sharp yell), and sensory feelings (a certain touch, a particular fabric, cold weather).   They can also be triggered by "traumaversaries" - anniversaries of significant events (like entering foster care), birthdays, and holidays. {Holidays, Birthdays, and Other Traumaversaries}


ADHD
ADD/ ADHD Behavior Characteristics
  • Easily distracted by extraneous stimuli 
  • Often does not follow through on instructions
  • Often interrupts/intrudes 
  • Often engages in activities without considering possible consequences 
  • Often has difficulty organizing tasks & activities 
  • No impulse controls
  • Might act hyperactive (constantly active and sometimes disruptive behavior )
  • Emotionally volatile, often exhibit wide mood swings
  • Depression/ anxiety develops, often in teen years
  • Over/under-responsive to stimuli 
  • Difficulty initiating, following through
  • Manage time poorly/lack of comprehension of time 
  • Often blames others for his or her mistakes 

Stimulant Medications and the "ADHD Brain"
I've always wondered why giving a kid with ADHD the equivalent of speed seems to calm them down when it makes everyone else so hyper. Katharine explains it in terms I think I understand.

ADHD increases a person's impulsivity and causes them to hyperfocus on everything. Our frontal lobe normally is supposed to be saying, "Stop that!" It controls our actions. When we take speed it speeds up the frontal lobe so that it catches up to the "ADHD brain" and can think before it acts! 


Meds aren't slowing kids with ADHD down.
They're speeding up the rest of the brain.

Stimulant ADHD Medication vs Non-Stimulants 
Unfortunately, my children can't take stimulant medications because they cause major side-effects. Both my children have bipolar disorder and stimulant medications can trigger mania. My personal opinion is that non-stimulant ADHD meds don't work as well but they're better than nothing. 




PTSD or ADHD or Both?

We saw a lot of overlap in behavioral characteristics especially between ADD/ADHD and PTSD.  


When Kitty first came to us (at age 11), she showed signs of extreme ADHD (she was diagnosed at age 4).  She couldn't sit still for more than a few minutes.  Meals were torture for all of us if we insisted that she stay through the whole meal.  We assumed it was because her ADHD was unmedicated, and quickly had her put on medication.  Her academic skills improved greatly (went from a 2nd-grade level work to testing at a 4th-grade level almost immediately).  

Kitty's behavior at other times (especially dinner time) didn't improve much, but we blamed that on other things (meds wore off by evening, ADHD meds tend to kill the appetite, she wasn't used to sitting at the table and having conversations...).

PTSD often causes issues with hypervigilance (very similar to the hyperfocus you see in ADD/ ADHD) and when you're feeling like you're living in a "war zone," you have a lot of trouble focusing and using other executive functions.  In other words, most of the symptoms of ADD/ADHD.  

Both my children had QEEG testing which determined that they do have ADD (Bear) and ADHD (Kitty), but they also both have Complex PTSD and it wasn't until there was some improvement with their trauma and attachment issues that we began to see more of the "ADHD" symptoms lessening.

3 Main Symptoms of PTSD

  1. Re-experiencing the trauma through intrusive distressing recollections of the event, flashbacks, and nightmares.
  2. Avoidance of places, people, and activities that are reminders of the trauma, and emotional numbness.
  3. Increased arousal such as difficulty sleeping and concentrating, feeling jumpy, and being easily irritated and angered.


Some examples of PTSD symptoms in Children

  • irritable, angry, or aggressive behavior, including extreme temper tantrums
  • hypervigilance
  • exaggerated startle response
  • problems with concentration
  • difficulty falling or staying asleep or restless sleep




Bipolar Disorder in Children
When children develop bipolar disorder, it is usually called early-onset bipolar disorder (or Mood Disorder NOS because many medical professionals won't diagnose bipolar disorder in young children). Trauma has been known to trigger early-onset bipolar disorder in children that have a genetic predisposition to it.

Early-onset bipolar can be more severe than bipolar disorder in older teens and adults. Young people with bipolar disorder may exhibit symptoms more often and switch moods more frequently than adults with the illness. 


Bipolar mania, hypomania, and depression are symptoms of bipolar disorder. The dramatic mood changes of bipolar disorder do not follow a set pattern -- depression does not always follow mania. A person may experience the same mood state several times -- for weeks, months, even years at a time -- before suddenly having the opposite mood. Moods can rapid cycle too - minutes, hours. Also, the severity of mood phases can differ from person to person.

Child Mania Rating Scale - 
  • periods of feeling super happy for hours or days at a time, extremely wound up and excited, such as feeling "on top of the world"
  • feel irritable, cranky, or mad for hours or days at a time
  • think that he or she can be anything or do anything  (e.g., leader, best basketball player, rap singer, millionaire, princess) beyond what is usual for that age
  • believe that he or she has unrealistic abilities or powers that are unusual, and may try to act upon them, which causes trouble
  • needs less sleep than usual; yet does not feel tired the next day
  • have periods of too much energy
  • have periods when she or he talks too much or too loud or talks a mile-a-minute
  • have periods of racing thoughts that his or her mind cannot slow down, and it seems that your child’s mouth cannot keep up with his or her mind
  • talk so fast that he or she jumps from topic to topic
  • rush around doing things nonstop
  • have trouble staying on track and is easily drawn to what is happening around him or her
  • do many more things than usual, or is unusually productive or highly creative
  • behave in a sexually inappropriate way (e.g., talks dirty, exposing, playing with private parts, masturbating, making sex phone calls, humping on dogs, playing sex games, touches others sexually)
  • go and talk to strangers inappropriately, is more socially outgoing than usual 
  • do things that are unusual for him or her that are  foolish or risky (e.g., jumping off heights, ordering CDs with your credit cards, giving things away)
  • have rage attacks, intense and prolonged temper tantrums
  • crack jokes or pun more than usual, laugh loud, or act silly in a way that is out of the ordinary
  • experience rapid mood swings
  • have any suspicious or strange thoughts
  • hear voices that nobody else can hear
  • see things that nobody else can see


Brain Injuries/ Brain Damage
Both my children have brain injuries (called Cerebral Dysrhythmia - the cause and time of injury is unknown - could be birth defects, could be from abuse).  The temporal lobe is definitely damaged in both children, Bear also has damage in the parietal lobe.  I always thought it explained a lot, and I believe more than a few of "our kids" have these issues.  

I always include their brain injuries when mentioning their issues to people who need to know, because I think it helps them understand that this is PERMANENT not something that therapy or medication is going to "fix." 

We are often told that brain damage can be "fixed," and honestly, I believe that to a certain extent that is true, but at some point we have to acknowledge that some of it isn't going to get better or we'll be blaming ourselves (or allowing others to blame us) for our child not healing.


Fetal Alcohol Spectrum Disorders (FASD)

Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual who is prenatally exposed to alcohol. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis.


FASD Behavior Characteristics

  • difficulty with memory
  • slow information processing
  • impaired executive functioning
  • problems generalizing
  • problems connecting cause and effect
  • poor repetitive language skills
  • perseveration
  • confabulation
  • difficulty setting/ reaching goals
  • trouble understanding abstract concepts
  • problems with social skills
  • trouble reading social cues
  • mood swings
  • lack of inhibitions
  • reacting poorly to changes
  • poor understanding of ownership
  • unrealistic expectations
  • poor expression of emotions
  • easily overwhelmed
  • interpersonal struggles
  • impulsive actions
  • inflexibility
  • repeated mistakes
  • vulnerable to peer pressure



Puberty

Puberty sucks. Those hormones rushing around adds a whole new layer of fun. The good news is that while ages 13 and 14 were horrible for my kids (biokids and adopted kids), things got better after that. More info in this post - The Teen Years



TREATMENT

Does It Matter What's Causing the Behavior?

The answer is, sometimes. Treatment can be different for different diagnoses. Some issues are biologically based, like the chemical imbalance leading to bipolar disorder. Treating bipolar disorder with therapy alone would be fairly ineffectual.

Neuropsychological Evaluations
The first step is a thorough neuropsychological assessment. This will give you a good picture of your child's physical, mental, and family history.  Assessments are critical because a thorough evaluation can provide recommendations used to create an individualized plan of care. 

Do remember that no one knows your child better than you do. The more information you can provide the neuropsychologist, the more accurate your child's evaluation will be.

Most important to understand is the necessity that comorbid disorders be treated concurrently. Mental illness and comorbid addiction disorders are intimately connected. Healing both means healing both as opposed to one or the other.

Why Won't My Child Just Behave?
We don't always know why children (especially children of trauma) act the way they do.  It’s possible that they just want to watch adults get all agitated, maybe they want adults to fight to distract them from the child (and thus avoid conflict), or maybe they're trying to recreate the chaos that their brains are used to and therefore it feels comfortable and familiar - often they were "pickled" in adrenaline (or alcohol) in utero.... 

Discipline vs Behavior Problems


Discipline problems (noncompliance, misbehavior) occur when the caregivers have not structured the child's environment for success or when parents are inconsistent (expectations or consequences), non-responsive, or inaccessible. When adults adjust their behaviors and attitudes, often children with discipline problems can be brought under control in as few as 3 to 7 days.
Behavior problems on the other hand lie within the child. These are persistent behaviors that do not disappear even with the best parenting (although good parenting can help to control the behaviors). These can include impulsivity, inattentiveness, and other behaviors like ADHD, FASD and immature behaviors associated with missing capacities in object relations.


YOU CANNOT EXPECT PUNISHMENT OR DISCIPLINE
TO "FIX" BEHAVIOR PROBLEMS!


Having behavior problems is like being born with poor eyesight. No amount of punishing or controlling is going to fix this problem. Glasses will help. However, the parent will be responsible for taking the child for regular eye check-ups, teaching him how to care for his glasses, and restricting activities where glasses might break. The goal is that by the time the child is 18, he will be ready and able to take full responsibility for the care of his own eyes and glasses.


Medication


Many of our children's major issues cannot be "fixed" by medication (C-PTSD, RAD...), and are trauma-based, not biologically-based. So why give them medication?

Alleviating Symptoms
I know a lot of times there is huge resistance to giving children meds, and while I agree that there are times some children are over-medicated (particularly those in foster care), I believe that it often means kids with trauma issues are struggling more than most. 

For kids with trauma-based issues, I believe meds are not healing or correcting the child's brain, but they can calm down all the outside/extra input, so that the brain can focus on building those new pathways. 

Children can't heal if they feel they are living in a war zone or they are struggling with basic coping skills, unable to function.

In my opinion, you can't work on healing trauma if you can't sleep, focus, sit still, react normally to external stimuli (like someone saying, "you dropped jelly on the counter," which, in my opinion, should not trigger a screaming rage but has)... Handling Dysregulation/ Meltdowns

There's a reason doctors prescribe pain medications after major injuries - it's because people heal faster when they are not in pain.


Therapy 

On the other hand, you can't just treat with meds. Meds control the symptoms, but it takes a lot of work to retrain your brain to function in a new way. This is where therapy and therapeutic parenting come in. To help our kids you must have both.

Get a good therapist who understands and has experience working with adopted/foster kids with trauma. We love our EMDR therapist for our daughter but still use a good attachment therapist too. Don't be afraid to "fire" the therapist if it's not a good personality match.
Questions to Ask a Potential Therapist

Therapeutic Parenting
Therapeutic Parenting is the term used to describe the type of high structure/high nurture intentional parenting that fosters the feelings of safety and connectedness so that a traumatized child can begin to heal and attach. 

Structure and Caring Support
When I realized this behavior was caused by anxiety, it made it easier to provide Calming Techniques and fight to make her world smaller and less overwhelming (by providing Structure and Caring Support). 

Age-Appropriate Parenting
Trauma can cause significant delays in development (emotionally, socially, intellectually...).  Frequent moves and other traumatic life events can also cause delays or even get them stuck at the age the trauma occurred.  Emotionally "triggering" events can cause a child to regress to a much younger age.  Most kids with PTSD (and brain damage from RAD) have a tough time with processing, memory, object permanence, emotional regulation...  


Expecting a child to "act his/her age," can cause frustration and anger for both of you.




EMDR therapy is the most recommended therapy for people with PTSD. It is most often used by soldiers and victims of trauma (like rape or being in a natural disaster), and usually only requires 2-3 sessions.  Obviously, people who have suffered from long-term trauma (Complex PTSD), such as child abuse, would most likely require more sessions.  

There are no medications specifically for treating PTSD, but with good therapy and meds that help with the symptoms, the child can recognize the effects of the trauma, learn to cope, and move on to dealing with the cause of the trauma.


Helpful Documents
Current Meds and Diagnoses 
New School Year Letter



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 ...so 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

Finding and Funding 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 (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 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). http://fletcherclan.blogspot.com/2012/03/myths-about-residential-treatment.html


How Do I Find Residential Treatment?

We've had quite a bit of experience with RTCs due to our severely mentally ill, lots of trauma issues, adopted children. 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 adoption subsidies). 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 of 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 turnover 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, and 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 the family expected to be involved (family therapy, as part of the treatment team, staffings... ?)  In what areas are parents allowed to be involved?  
  • What kind of testing/evaluations do you do?
  • What types of health care professionals 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 the following 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. 


Finding a Residential Treatment Center (RTC)
Two free resources to match RTC's with funding options and children's needs. I have not used their services but they came from a good source 
http://www.kidlinktreatmentservices.com/

Some Ideas:
Texas-based -
Youth for Tomorrow
 http://www.yft.org/ A not-for-profit behavioral health care company in Texas service locator for public agency children in need of residential services. 
Children who may be emotionally disturbed, mentally retarded, chemically dependent, medically fragile or developmentally delayed, or involved in the juvenile justice system. Texas Medicaid does not cover residential treatment so this agency can help those needing sliding-scale fees. 
Trauma-Informed
CALO - https://caloprograms.com/ Treats students (9 to 18yo) and families impacted by traumatic experiences which occurred in the developmental period
Chaddock - https://www.chaddock.org/ Treatment of children suffering from the psychological, emotional, and spiritual effects of significant abuse, neglect, and trauma. 

Neurobehavioral
Meridell Achievement Center
 https://meridell.com/  - specializes in neuropsychiatric and neurobehavioral treatment for patients ages 11 to 17.

Sexual Behavior Problems
Contact the Association for the Treatment of Sexual Abusers (ATSA) https://www.atsa.com/ for referrals.
Piney Ridge Treatment Center RTC and Group Home - includes help for children with sexual behavior problems.


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 psychiatrists 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 Voluntary Placement Agreement or Joint Managing Conservatorship with the state? This is a little like placing your child into state foster care so your child will have access to mental health services but unlike foster care, 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. https://www.dfps.state.tx.us/handbooks/cps/files/CPS_pg_6800.asp 
  • What about facilities like Methodist Children's Home? https://www.mch.org/ 
  • 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 (https://fndusa.org/contact-us/programs/parent-to-parent/) Provides emotional & informational support for families of children who have special needs.
    NAMI (National Alliance on Mental Illness - https://www.nami.org/ 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, resources, and/or clarifications for funding sources - please comment and I'll add them to the list!