April 25, 2016

Autism Advocacy: Closing Brief 1:1 LVN 2014

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Disclaimer: I am not an attorney. I have a Master's Degree in Cross-Cultural Education, but that isn't what drives me. My real education: Being an autism "warrior mom" who learned how to write something close to a legal closing brief, to advocate for my autistic son after years of screaming in the wind, trying to get San Diego Regional Center "decision makers" to understand and provide services to people with severe autism.

Written Closing Brief arguing 1:1 LVN support for autistic son

By Kim Oakley, For the Honorable Mary M.

In the matter of (OAH *&^%%) with consolidation of other issues.

James G. vs. San Diego Regional Center
December 12, 2014

James G. is a handsome, energetic, green-eyed, severely-autistic young man. In addition to autism, James has seizures and self-injurious behaviors requiring extraordinary day and night supports.

“Nothing is more difficult for parents of autistic children to tolerate than self-injurious behavior (SIB). SIB behaviors are unpleasant to observe, think about, or discuss, but they do exist and must be dealt with,” wrote autism research psychologist, Dr. Bernard Rimland.

It’s fair to say that if a person were abusing James G. there would be urgent action. An urgent legally mandated action to stop or prevent the abuse. Yet, when James is held captive to his own self-abuse, we find no sense of urgency to provide additional services needed to stop or reduce the self-abuse.

San Diego Regional Center (SDRC) advertises [on their website] they have a “zero tolerance for abuse and neglect.” It’s fair to say that if SDRC truly believed their “zero tolerance policy for abuse and neglect”, they would not hide behind layers of bureaucrats and outdated policies to avoid providing additional services to protect people with severe autism from self-abuse.

We can all agree that physical abuse and self-abuse both cause harm. And here is where this reality applied to our laws continues to confuse people.

It is indisputable that we, as a civilized society, can’t permit or tolerate people abusing defenseless vulnerable children or adults. (Ca. Penal Codes 273 and 368)

Yet, amazingly, even shockingly, we as a society, often forget that there are people with severe autism who suffer—by no fault of their own—from self-harm. Does our duty to protect these people end based on their degree of disability? Certainly not. In fact, we must do all we can to provide proper services and supports to honor the special protections set forth by law to protect people with severe autism from self-harm (Ca. WIC Codes 4502-4505)

To ignore the need to protect an autistic person from self-harm is akin to ignoring the need to stop a vulnerable child from self-harm.

Does SDRC believe their policy about “zero tolerance for abuse and neglect” of disabled?

If they did, SDRC would apply that policy to severely-autistic people such as my son, and not neglect to examine video evidence showing my son needs two staff to to safely perform a urine catheterization, dress him, apply wound care, safely transport him in the community to and from medical or dental appointments, transfer him into and out of baths, or that it has, on occasion, required up to 3 staff to protect him from self-abuse during a simple diaper change.

James has a right to “dignity” and “humane care.” {Ca. Wic Code 4502 (b).

Is it dignified or humane to repeatedly deny adequate services to a severely-autistic person who requires extraordinary care and supervision? There is no dignity for a person when they are denied the help they need.

There is nothing humane about an agency blaming dubious budget cuts or hiding behind inflexible policies which result in someone repeatedly suffering harm in the absence of adequate staffing supports.

My son is a severely-autistic citizen and can’t speak for himself.

If he could, he would surely, as we all would, want to have adequate services and supports to meet his needs.

SDRC would have you believe his needs are no big deal. Everything is just fine. No need for anything more. Fortunately, the evidence speaks for James Gilbert's extraordinary and unusual needs.

And it screams loudly that his needs have been repeatedly ignored by people in positions of power, who control--and who can advocate for more funding— to insure those needs are met.

SDRC tells the public they “advocate” for the disabled.

Yet, we find SDRC taking dozens of families, each year, to Administrative Law Hearings fighting against providing services.

This is pure madness and hypocrisy at an unspeakable level.

Is it really a funding issue?

Billions of dollars are granted each year to California’s 21 Regional Centers to help the disabled. Additionally, they enter into agreements with federal government to receive MEDICAID waiver funding (See 1915c Home and Community Based Waivers).

Federal waiver requires the Regional Centers to pay 100% of the cost of services and then get reimbursed for 50% of those costs from Federal Funds.

This isn’t an issue of budget cuts.

It’s an issue of failing to come up with creative solutions, seek out alternative service delivery options, insure quality care and appropriate...funding to secure needed services and supports.

During this instant case, evidence provided for James included, but was not limited to, nursing notes from home LVNs, Seizure record from home LVNs, three treating physician’s recommendations (neurologist, psychiatrist and primary care doctor), testimony from Jamey’s brother, father and mother, video evidence of Jamey’s behavioral and medical needs, his level of care, a nursing assessment, his IPP, and testimony from three nurses who directly work with James.

We also heard from SDRC employees, Dan C, Lori S, Lori B and Kathy K.

Evidence: Jamey’s IPP

Goals: “Need for prevention of SIB (self-injurious behavior).” “Monitoring of seizures” “Administration of medications” “Assistance w/ eating, dressing, [diaper changing] toileting.” “Daily exercise sensory needs” “Fixed routines”. “These goals will be met by SDRC funded 1:1 LVN”.

Now ask yourself, how is it logical or possible for all these goals to be implemented, when Jamey doesn’t have 24 hours of LVN care?

Three LVNs, the parents, video evidence and three treating physicians provide evidence that Jamey’s seizure and self-injurious behavior are unpredictable and occur within a 24 hour period, at all times and hours, day and night.

“The Rights of developmentally disabled person and the obligations of the state toward them are implemented through individual program plans (IPP)…” Clemente v. Amundson, 60 Cal.App.4th 1094 (1998) (citing $4646, $4647)

IPP, page 2: “According to Mrs. Oakley, Jamey frequently requires 2:1 support while engaging in SIB during diaper change (in video evidence), during various transitions (see video evidence)”, etc…

Let’s be clear: it’s not “according to Mrs. Oakley that Jamey frequently requires 2:1 support”, it’s according to a preponderance of evidence that shows James needs frequent day and night 2:1 level of support.

IPP, page 5, “outcome in place.” “Jamey’s family would like to see Jamey’s SIB effectively controlled and treated at home and in his day program. They would like to see him protected from injury due to SIB by the consistent presence of trained caregivers.”

Where are the “trained caregivers” to effectively control SIB at home from 6pm to midnight?

Where are they at 1am, 2am, 3am, 4am, 5am, etc…? Where are the “trained caregivers” when ABA isn’t here?

A nurse is here for nursing needs.

Kathy K testified she was concerned about nurses having to restrain Jamey.

If a “trained caregiver” were provided to effectively control SIB, nurses wouldn’t have to struggle alone to physically restrain him.

I can’t be here 24/7.

I’m here at home most days, every day and night, to back up nurses and help my son. At some point, our family would like experience the true meaning of respite.

Evidence: Nursing Health Assessment done by SDRC Vendored RN, Becky W. AUGUST 26th, 2014

*I could not submit nursing assessment in the prior Fair Hearing, due to SDRC providing it to me on the day of the Hearing. The following is contained in the nursing assessment in evidence:

Page 5: “During night staff alerts mother to tonic-clonic seizures, as 1 caregiver ensures safety, preventing injury, falls and SIBS, the other prepares and administers oxygen and rescue meds.” (Evidence to corroborate on recent videos in evidence)

Page 6: Under Behavioral needs: “SIB occurs on a daily basis with varying frequencies and durations lasting up to and including an entire day and night, and may be more severe when related to underlying, unidentified, undiagnosed or misdiagnosed medical issues….Severity of behaviors can become very violent, with continued self-punching to the head/ears… He may need to be assisted to floor for safety and frequently requires 2:1 support to prevent injury to himself…” (Videos in evidence corroborates this)

 Page 6: “Jamey is very active and enjoys being outdoors...he enjoys going to the library with 2:1 LVN support on Saturdays.” James no longer has 2:1 LVN support necessary to bring him to library on Saturdays. (This has increased his SIB on Saturdays, especially when it’s raining outside and he’s restricted to inside the home).  Mother has had to go back to being the 2:1 support on Saturdays, in addition to being the 2:1 support M-F and Sundays, which leaves her little time for her husband, when he’s off work at the Fire Station or time for her other sons.”

Page 7: “[Jamey’s] his maladaptive behaviors are not considered aggressive. James has bitten his mother and staff when they have intervened to prevent him from injuring himself from SIB, and while he was attempting SIB of biting himself and biting others instead.”

“No formal behavioral plan was identified.”

That’s because SDRC hasn’t assessed Jamey’s BEHAVIOR since 2009.

SDRC told this court they would provide a behavioral assessment through Jamey’s Autism Day Program, it is unclear if that will include a formal behavioral plan. Or when that behavioral assessment will take place.

Page 8: “Per mother and staff report, 2:1 support must be provided frequently by LVN staff AND mother and day program staff to prevent injury to James and others when James is exhibiting seizure activity requiring administration of rescue medications and oxygen and while engaging in SIB during diaper changes and when ambulating, during transportation, transitions, after bathing and during ADL’s (aka activities of daily living, such as bathing, grooming, eating..) Seizure precautions, oxygen precautions when in use, fall and choking risk.”

Page 10: “[James] he is extremely active and prone to impulsive movements, SIB, and seizure activity” (James can walk up to 5 miles a day. (the most walked was 8 miles). And continue walking, long into the night).

Page 11: “Assist of 2 is needed for the safety of James and other when exhibiting SIB or seizure activity.” (Evidence to corroborate on recent videos in evidence)
“Recent prolonged urinary retention has required catheterization at home, which necessitated support of 2 to 3 persons for safety.”
(Evidence to corroborate this on recent videos in evidence)

 “During this observation 2 person assist was required due to SIB of slapping himself in the head.”

Page 12: Under Agencies/Programs, “James attends T Program M-F, from 8am-3pm with 1:1 LVN support….Rolando A. of T INC, reported that James continues to require 1:1 hands on (support) all day long at program in ADDITION to the LVN that accompanies James to program.”

On the last page of Nursing Assessment, we find under see recommendations from Kathy K, the SDRC Nursing Supervisor. Despite the nursing assessment stating it takes up to 3 people to cath Jamey, on 9/4/2014, Kathy K, who told us she reviewed his records, writes, “current LVN level of respite is able to meet need for catheterization.”

Kathy K. does not state the level of care needed to protect James from self-harm.

She does not state the level of care noted to perform a safe catheritization, (despite being an RN and knowing full well that one RN or LVN can't safely cath a person with severe autism and impulsive self-injurious behavior).

Amazingly, Kathy wants us all to believe the current LVN level of respite is just fine, (as if we're supposed to ignore facts and reality and jump into her strategically orchestrated willfully ignorant fantasy world).

SDRC witnesses

We heard from Dan C, who, at a prior hearing testified under oath, that deflections homes could meet Jamey’s needs and would be a “more cost effective option for SDRC”. However, upon cross examination, Mr. C. ‘could not recall’ his prior testimony, despite it being only a few months old.

When I confronted Mr. C on his recent prior testimony, he admitted cost wasn’t just 8,000, but could be up to 12,000 a month.

C further admitted he did not include cost of providing transportation to and from my son's autism day program, cost of the autism day program or cost of supplementary LVN staff, which SDRC just recently admitted they would “consider” inside a deflection home.

(SDRC always "considers" things in front of the Judge to look as if they're trying to be reasonable. It's disingenuous. Theatrics. Parents of autistic children in crisis don't have time for bureaucratic theatrics. We don't standby to standby. We are conditioned to act immediately to protect our children from self-harm. We need adequate support and relief to carry on.)

Furthermore, Mr. C did not tell the Administrative Law Judge (ALJ) at prior hearing true cost of an out of home placement for James, [in an attempt to fool the ALJ into thinking it was a "cost effective placement" compared to providing us the requested IN HOME increase of nursing respite care. In essence, they lied.]

How could Mr. C know the true cost, if total cost has never been assessed, calculated or documented, nor compared to total cost of nursing care in home?

It is simply illogical and improbable that SDRC could  know the cost of an out of home placement, when there is no evidence that SDRC has ever taken the first step in negotiating a rate with a deflection home for James.

Mr. C further testified that deflection homes are group homes that have negotiated rates. And that deflection homes enter into 'service agreements' with SDRC.

Yet, SDRC has never entered into a service agreement with a Deflection home that said they would accept my son into their home.

Request for Judicial Intervention regarding exception to SDRC's Purchase of Service Standards (aka POS)

We ask this court not to ignore extensive evidence and testimony provided that shows James meets criteria for an “exception” to SDRC’s rigid, inflexible policy.

Evidence shows James has an extraordinary, unusual combination of behavioral and medical issues related to his severe autism, and as such is sufficient to meet the standard needed for an "exception" to SDRC’s rigid, inflexible POS policy.

We also ask the court to compel SDRC provide the name of a deflection home and a written cost analysis of how much the home will cost, with a description of supplementary staff to meet his needs, in light they claim a deflection home is a “more cost effective option” that can “meet his needs.”

We ask this, because on 12/4/14, TWO days after this hearing, I, Kimberlee Oakley, get an email (see recent emails submitted with fax) from Jamey’s new Service Coordinator (SC), Sarah S.

In this email, Sarah claims a home in Fallbrook is “interested in meeting Jamey” and has an “opening in a private room.” [Regiional Centers don't give families a list of group homes to visit.

{The regional center will direct a family to a group home, based on the level of care the Regional Center staff (usually a nurse or program manager) decides matches the client's needs, which, by the way, Regional Centers often LOW BALL the client's level of care, placing severely disabled clients into lower levels of care, in the name of being "cost effective." Sadly, such callous disregard for the TRUE level of care, in the name of being "cost effective"--- has put clients in dangerous situations and cost a lot of lives.}

On December 5th, I send back an email to Sarah, telling her “I will call” this group home. Minutes later, on same day, December 5th, I call (310) 493-2135, the number Sarah provided in email, and speak with “Huber.”

Huber promptly tells me, SDRC did not tell him or the owner of the residential home that “Jamey needs suppositories or IM injections.” And SDRC did not tell them Jamey had seizures. “We are not allowed to do suppositories or injections here,” says Huber.  He further stated, “we don’t have LVNs on staff…that would be supplementary staffing.”

Huber says Jacklyn home would need an “exception” under licensing, to provide nursing services.

When I ask if any other clients in home have behavioral issues, he says, yes, there is an “aggressive” client in home with “violent behaviors.”

Apparently, SDRC didn’t gather that critical information in their conversations with Jacklyn’s home. (My son can't be around other autistic people with violent behaviors, which, according to Huber, included picking up tables and tossing chairs into the wall.)

When I tell Huber Jamey still sucks his thumb, has the mind of a toddler and can’t physically defend himself, Huber says, “I don’t think this is the right home for your child.”

In short, “Jacklyn’s Home” isn’t prepared, legally licensed or set up with staffing in place, so they can’t meet Jamey’s needs.

Worse, it’s highly questionable how safe this home is for my autistic son. 

After speaking with Huber, I email Sarah back telling her I am surprised she didn’t ask basic questions about Jacklyn’s home, before telling me there is home that wants to meet James.

I ask Sarah Scott what her thoughts are from here. Apparently, she had no independent thoughts as I received no reply. No reply. Awesome. 

A few days later, Sarah leaves me a phone message that SDRC is “open to supplementary staff” inside the group home.

What that means is anybody’s guess. Perhaps it will take 5 more Administrative Law Fair Hearings to figure out what that means. These people breathe and eat ambiguity. 

Sarah says placement review papers sent to Jacklyn’s home didn’t provide all the information about Jamey. And that they should “meet the client.” How “meeting the client” is going to provide them any further information than the plethora of information and video evidence that is already in SDRC’s hands is anyone’s guess.

I then send Sarah an email back, asking her to please be more specific and to please communicate with me by email.

As of December 14, 2014, as I write this closing brief, Sarah has not replied, leaving us stuck in familiar gaps of communication that has driven me crazy for years, in my relationship with SDRC.

We ask for judicial intervention in this matter. Chronic ambiguous declarations from SDRC on serious matters pertaining to Jamey’s extraordinary needs, level of care and whether a group home can meet his needs, are directly related to the issues in this case.

Lori S
Ms. S testified, under oath, that claimant’s mother had visited a group home and didn’t want James there because it ‘didn’t have a bath tub’. However, when confronted during cross examination, S admitted she really wasn’t sure if Mrs. Oakley had ever visited this group home. Mrs. Oakley would later testify she had never visited the group home S said she visited. In short, common sense will tell you, Ms. S either deliberately lied, or repeated, in the absence of any attempt to verify the truth, the same falsehood told to her by another SDRC employee.

Recall during testimony the mother and father testified about how SDRC lied to them about the level of care James was getting in a prior group home placement at Best Care in Long Beach, CA.

Parents were promised verbally by SDRC that James would get 1:1 care.

They even took us to a Fair Hearing over the issue. We lost.

James didn’t get the 1:1 care assigned to him.

 It remained only a verbal agreement.

The direct result of that “verbal agreement” was no 1:1 assigned to James.

That lack of proper staffing resulted in my autistic son left alone behind a closed door to beat himself for hours, while one group home staff in charge of 6 disabled clients, was sleeping.

The senseless self-beating led to emergency surgery, permanent disfigurement to his ear and a goodbye letter to us from group home, saying "he now needs 2:1," which was INSANE, considering he hadn't even gotten 1:1 staffing.

We ask this court to consider how important it is that SDRC be compelled to formally document level of care so it’s a service James is guaranteed, so James is not once again, placed in a dangerous position without the now EVOLVED need of 2:1 care that he needs, which is ironically in evidence as of 2009, as a level of care this SAME group home said he “now needed.”

The need for 2:1 is clearly documented in 2009.

Since then, SDRC has never considered what the group home stated he needed.

Nor have they considered what Jamey’s doctors, nurses or anyone else says he needs, in regards to 2:1.

The continual apathy, disregard and casual indifference for evidence and facts concerning my son's individual needs, can be viewed as a product of “apathetic attitudes”, “glaring neglect” and “shameful oversights”, concerning the handicapped in this country, as described in Supreme Court in Alexander v Choate, 469 U.S. 287 (1985).

In this case, in my autistic son's instant case, this must stop. And I will stop at nothing until he gets the services he needs. 

This court has a chance, in this case, pertaining to James G, to make something very wrong, that has gone on for way too long, closer to being right.

 S also testified that there was a home, “Jacklyn’s home”, a deflection home that was an option for James.

This, too turned out to be another ruse.

Recall the aforementioned truth about “Jacklyn’s Home” above, under “Judicial Relief”.

Lori B
We heard from Lori B, the SDRC resource developer, who testified Jamey’s level of care in an out of home placement would be “VERY HIGH.”

Ms. B was the only SDRC employee that seemed genuine and concerned about what’s going on with James.

She acknowledged emails sent that testified to the fact there were no deflection homes available at the time Darin T testified there were homes to meet James’ needs.

While B testified that Jamey would need a very high level of care in a home, when asked during cross exam, she was not able to say what that cost would be.

Ms. B acknowledged emails that reflected SDRC keeps changing Jamey’s level of care status.

 Email evidence shows SDRC first listed Jamey in 2009 as Deflection status, then dropped him down to Level 4 status, then, when no home at level 4 could meet his needs, decided in November of 2014, he was once again Deflection status.

Ms. B admitted during cross examination there had not been deflection homes who had said they could meet Jamey’s needs, as was confirmed by emails (obtained through subpoenas) she had sent to Darin T.

Kathy K
We heard SDRC nursing supervisor, Kathy K’s testify that she reviewed Jamey’s records. However, it is highly illogical and improbable she’s reviewed all his records, since there are 5 years of nursing notes K has never read, nor ever asked the nurses for, and she herself only produced ONE quarterly nursing note into evidence.

There are 5 LVNs who work with James. SDRC vendored LVNs have worked with Jamey for over two years.

There should be a total of 40 quarterly nursing reports. SDRC produced one.
Three of Jamey’s SDRC vendored LVN’s testified nobody at SDRC has ever contacted them to ask about Jamey’s nursing care needs. There are over 12 months of nursing notes on James (several hundreds of days) written by SDRC vendored LVNs.

Kathy K has never asked the LVNS who work with Jamey for their nursing notes, so it’s again illogical and improbable that K has reviewed complete records of Jamey’s needs.

She is basing her opinion about what Jamey’s needs off of speculation, off of an incomplete review of records and an incomplete view of video evidence of Jamey.

K admitted she only watched a few videos of Jamey. But she was quick to say she saw no nursing skills needed.

A complete look at all the videos would surely show nursing skills performed.

Perhaps RN Kathy K. missed the video showing LVNs performing urine catheterization, a skilled nursing intervention.

And maybe RN K. shut her eyes when oxygen was applied to Jamey during a tonic-clonic seizure. Only an LVN or RN can apply oxygen.

What about where James gets PR Diastat, a rescue med, during a seizure, another situation warranting nursing skills.

And who knows, maybe K experienced syncope when she saw videos of Jamey slamming his fists into his head. It may have blown her mind. 

And maybe she forgot that severe head punching seen on video evidence, later required an LVN to administer wound care and PRN pain meds, because after all---an RN should know enough anatomy and physiology to know that when you get punched in the head, it can give you a screaming headache.

And that with every [self-inflicted] head punch, comes more pain.

And when you are a severely autistic person who has trouble processing what is happening, this pain will cause more self-injurious behavior. Yes, SIB begets SIB.

Thus, you must quell the pain, let’s say, with Jamey’s prescribed topical lidocaine, and fast melt Ibuprofen.

It’s a complex situation, which provides a clear understand of who James is, one in which requires both an LVN and behavioral support staff.

Jamey’s family and LVNs know this situation well. This is our world. A world apart from festively decorated cubicles, pontificating paper pushers and cheerfully calm call center operators. 

It takes two people to meet his needs more times than SDRC is able to count or acknowledge.

When confronted on cross examination about an LVN needed to monitor Jamey’s unpredictable seizures, Kathy K. admitted an LVN is more highly skilled to do this, compared to an unskilled caregiver.

Monitoring of seizures by an LVN is a goal listed on Jamey’s IPP. It must be implemented. It can’t be implemented if there is no nurse here. SDRC wants mom to do nursing shifts. Mom is not a nurse. (It’s fair to say the state has been unjustly enriched by the mom’s nursing skills in the absence of being compensated as a licensed nurse.)

This is contrary to providing the respite support she desperately needs.)
It’s fair to assume that if an LVN is needs to monitor Jamey’s seizures, that same LVN is expected to treat a seizure with prescribed, controlled rescue meds, including oxygen, something a skilled nurse does on a regular basis with Jamey, provided in evidence on the seizure logs.

K also testified during direct that she believed Jamey wasn’t unique. However, upon cross examination, Ms. K admitted out of 20,000 clients served by SDRC, she could only recall 4 with unique needs like James Gilbert.

At some point, we heard K tell the ALJ that James Gilbert could get “generic” nursing services through an NF/AH Waiver. A complete falsehood. James does not meet the criteria for the NF waiver. This waiver is for medically fragile or technologically dependent patients who require care for 90 consecutive days or greater in an inpatient nursing facility. (Title 22, CCR 5114 and 51355).

Finally, we heard Kathy K testify she had ‘concerns’ LVNs were physically restraining Jamey during self-abuse. Let’s look at this dubious phony concern.

Fact: Jamey has had nursing care services through SDRC since 2009, and yet, just now, in 2014, FIVE years after LVNs have been working with Jamey, Kathy K is concerned?

She just now notices that it’s sometimes necessary for an LVN to physically restrain Jamey during self-injurious behavior to protect him from harm?  Really?

This certainly would explain why Ms. K offers no creative solutions or alternatives to physical restraint during a severe self-abusive meltdown. Simply put, she has nothing to offer, but a drive by critique.

IF Kathy K, was truly concerned about LVNs restraining Jamey, she would be especially concerned James needs additional behavioral support staff to help him, pursuant to his legal right under Cal. WIC Code 4502 (h) to be “free from [self] harm…and [self} abuse.”

Evidence James Qualifies for an Exception 

Purchase of services best practices include provisions for exceptions to ensure the health and safety of the consumer or to avoid out-of home placement or institutionalization; (WIC 4620.3(f).

SDRC”s own “Basic Service Standards” states that “all services to be provided to consumers WILL BE determined based upon the INDIVIDUAL choices and NEEDS of the consumer….and not upon rigid, INFLEXIBLE standards….”services in these [purchase of service standards] are not all inclusive. Unusual circumstances related to a developmentally disability may warrant additional services not listed. Exceptions to these standards WILL be considered on an individual basis.”

When a Regional Center WILL NOT consider the exception, as in our case, an ALJ can rule that a Regional Center must grant an exception. I believe we have met the burden of proof that Jamey warrants additional services not listed and meets the criteria a reasonable and prudent person would grant for an exception to SDRC’s purchase of service standards.

Video evidence alone provides proof James has extraordinary needs related to his severe autism and epilepsy. For instance, video evidence shows that it sometimes takes up to 3 people to re-direct James from severe self-injurious behaviors. And it takes up to 3 people (1 LVN and two others) to safely perform urinary catheterization. So rare is this situation, there isn’t one service SDRC provides that even mentions such a scenario.

So rare is this individual need, it’s not even a level of care (2:1) officially discussed. I’d say we have unusual and extraordinary circumstances before us.

James step-father, who has known Jamey since he’s been 2 years old, and is a Fire Captain of almost 30 years, testified that he has responded to over 30,000 emergency fire and medical aid calls in his career, many to group homes for developmentally disabled and has “never seen an autistic person with complex needs like Jamey.”

Three LVNs (Luis A, Chelsea W. and Katie B.) who work with Jamey testified that Jamey has “complex behavioral and medical needs.”

LVN Bolger, Walker and Aguirre also testified that James’ seizures are unpredictable. And he has three types of seizures, making it essential to monitor and treat each type of seizure.

LVN Bolger, Walker and Aguirre further testified that James’ self-injurious behavior is unpredictable and rooted in multiple antecedents that fluctuate daily
We heard the three LVNs who work with Jamey testify to how often the mother has to help them, due to James needing day and night 2:1 support.

Mother testified Jamey’s behavior and medical needs are often intertwined, making it impossible to separate needed medical and behavioral services and supports. For instance, James can exhibit self-abuse that triggers one type of seizure activity, or have another type of seizure activity that triggers self-abuse. Or an unexpected cold virus can send him into days of self-abuse.

While a nurse can deal with some of the behaviors medically, in that they can give PRN medication for pain triggering self-injury, the nurse is not a behavioral support staff person.

One nurse ( as seen in video evidence) requires frequent back-up to address Jamey’s medical and behavioral needs, sometimes both, at the same time (as seen in the catheterization video), where someone must stop head-punching at one end of Jamey’s body, while another nurse inserts urinary catheter. Still, this may require yet ANOTHER person (3:1) to support the middle of his body, so upon my son trying to sit up during this delicate procedure, the catheter won’t tear the inside of his private part.

Surely, this scenario would be nightmare experience, as having that delicate area injured would trigger a savage self-injurious meltdown and require multiple people to protect him and get him to the hospital.

Must that happen before Jamey finds relief in this court?

Three of Jamey’s TREATING physicians provided written testimony to the extraordinary needs of James… Dr. B, Jamey’s treating primary care physician, and Dr. O, Jamey’s treating psychiatrist, stating…self-injurious behavior can lead to lacerations that can lead to life threatening staph infections.

Dr. D, Jamey’s neurologist provided written evidence that Jamey needs 1:1 24 hours continuous nursing care due to his seizures and needed “extraordinary care and supervision.” Dr. D. mentions better seizure control with current meds, but is referring to the atonic seizures, which, if you recall, are only ONE type of seizure Jamey has. Atonic seizures are what landed him in the hospital last year, for two months. That leaves two other seizures still uncontrolled, the myoclonic and tonic-clonic seizures, which still require constant monitoring and treatment, and which occur at all times of the day and night.

Mother testified autism research shows only 30% of autistic people have epilepsy. And within this 30%, you don’t find many who have three types of seizures like Jamey does.

Mother testified autism research shows only 10-14% of autistic people have self-injurious behavior, and within that percentage, there is a spectrum of mild to severe SIB…Jamey being severe i.e.…causing hematoma to ear.

Kathy K admitted that out of 20,000 clients served by SDRC, she can only recall 4 that have the unique and extraordinary needs of James. Recall, Kathy K. has worked for SDRC for several years, in a position, as a nurse supervisor, where she would be alerted to SDRC’s autistic clients with the highest level of medical needs. And in all the years she’s worked at SDRC, out of 20,000 clients, she testified she recalls 4 others like Jamey.

SDRC’s reliance on a rigid, inflexible fixed policy is inconsistent with the Lanterman Act's stated purpose of providing services "sufficiently complete to meet the needs of each person with developmental disabilities." (§ 4501.) The Act clearly contemplates that the services to be provided each client will be selected "on an individual basis." (Association for Retarded Citizens v. Department of Developmental Services, supra, 38 Cal. 3d 384, 388.) [226 Cal. App. 3d 233]

A nurse left alone is not sufficient to stop the self-abuse when he’s having his diaper changed (video evidence) A nurse left alone is not sufficiently complete to meet Jamey’s need to stop self-abuse during transitions. (Video evidence).

LEVEL OF Nursing and Behavioral CARE

James unpredictable seizures alone warrant 24-hour continuous nursing care (see neurologist note). But his medical needs don’t stop there.  SDRC”s own nursing assessment (in evidence) documents the extensive medical issues James has.
Only a skilled nurse can give prescribed oxygen. Only a skilled nurse can deliver a controlled substance to a patient during seizure. Seizures are unpredictable, so there is no way to pinpoint when or when not an LVN would need to be present for a seizure. Only an LVN or RN can give a suppository. Only an LVN or RN can assess for aspiration risk, which is noted risk on SDRC’s own nursing assessment. Only an LVN or RN can do an IM injection. Only an LVN or RN can determine and deliver controlled PRN medications (see nurse assessment documented PRN meds). Only an LVN or RN is permitted to do patient wound care, especially since Jamey is at risk of staph infections, to which those signs and symptoms require higher level of care. Kathy K, SDRC RN admitted under cross examination that an LVN is a higher level of care than a regular caregiver, concerning the ability to monitor James for being an aspiration risk. It would be inhumane care to have an unskilled, unlicensed caregiver inserting a suppository inside the tender area of Jamey’s rectum.

Or an unskilled, unlicensed caregiver insert a urinary catheter inside Jamey’s most delicate private part. Would this a dignified way to treat a severely-autistic person with fragile behavioral and medical needs? No, it is not. An unskilled person would, without a doubt, place Jamey’s health and safety at risk because they are NOT trained to do this medical intervention. Cal Wic Code 4502 (b) A right to dignity, privacy, and humane care.

Video evidence provides ample evidence there is little if any respite going on in the home, given James’ frequently requires 2:1 level of care, and the mother is the constant 2:1 back up, day and night, for LVNs.  In addition to being the 2:1 day and night support for LVNs, mother is also left alone to deal with her adult autistic son’s seizures and self-abuse when her husband is at work and no nurse or behavioral support is provided (shown on video evidence). James step father is a fire captain who can be, and has been gone, at least one time a year, gone for up to 30 days on a wild land fire.

James’ parents are not nurses. James needs nursing services. James parents are not behavioral intervention service providers. James needs intensive behavioral support and services.

The Lanterman Act says nothing about a parent of an adult child having to provide needed services for their adult child. (OAH case 2011100366, Judge Robert Walker ruling)

Did SDRC lie to the ALJ about Having a Group Home that Could Meet Jamey’s Needs?

Recall cost effective argument SDRC infused in the argument that there was a home that could meet his needs. In previous hearing, SDRC wanted the ALJ to believe that placing James G in a deflection home would be a “cost effective” option. In fact, SDRC told the ALJ it would only be 8,000 a month. The ALJ relied on this testimony, even citing it her decision to deny James the services family was requesting to allow James to live at home.

SDRC’s own witness, under cross examination, later testified, in this hearing, that what he said at prior hearing, wasn’t the whole truth.  Dan C admitted he hadn’t calculated the entire cost. Nor could he, or Darin T, or anyone else at SDRC, since there was never a negotiated rate or service agreement between any group home that said they could meet Jamey’s needs.

And here we find, just recently, SDRC bringing up supplementary staff for James in a group home, certainly not a cost that was ever presented to the ALJ in SDRCs argument for “cost effectiveness.”

SDRC told the ALJ there were deflection homes to meet James needs. Yet, their own witnesses, and emails testify to the reality there were no deflection homes to meet his needs. The evidence answers the question as to if SDRC lied to the ALJ. SDRC’s motive to mislead ALJ is clear. They didn’t want to fund more services at Jamey’s home. SDRC wanted and wants family to start a placement process for James in order for James to get the supplementary staff he’s needed all along, at home. SDRC is tired of having to secure LVNs at home. There has been problems securing them in the past.

There were abusive caregivers that led to a nightmare experience for everyone involved. They want James in a group home to wash their hands of this.

While family is certainly open to placing James, it is simply inconceivable, and unlawful, that in the interim of SDRC’s long, drawn out, ambiguous quest to produce a group home that can meet his needs, that James and his family have to suffer a lack of needed services and supports at his home, right now. “A family shall NOT be required to start a placement process or commit to placing a child in order to receive requested services.” CA WIC Code 4685 (4).

Recall again, the aforementioned, Dan C, at a prior hearing, testified, under oath, with great surety, that deflection homes were a home that could meet Jamey’s needs and would be more cost effective option for James.

However, upon cross examination, at current hearing, Mr. C claimed he couldn’t recall what he said at the last hearing. And then admitted the cost wasn’t just 8,000 but could be up to 12,000 a month. He failed to include the cost of Teri Inc., Autism Day Program, transportation and LVN supplementary staff (all listed on James’ IPP, as services he gets) that would follow Jamey into a group home placement.

 Costs for James’ services and supports in a group home should not be hidden in half-truths and false statements.

If SDRC feels it must result to misleading an ALJ over the cost of Jamey’s care, SDRC can appeal to the Director of DDS to seek relief from the Legislature, which can resolve a cost effectiveness problem, by appropriating more funds for people like James.

SDRC should not prevent the shortfall of any funds for James “degree of disability” by relying on a rigid policy to give him anything less than the Legislature provided in sections 4501, 4502 et seq. "`[t]he extent and degree of disability are questions of fact.'" Gilstrap v. State ex rel. Worker's Compensation. Div., 875 P.2d 1272, 1273 (Wyo. 1994) (quoting Leonard v. McDonalds, 746 P.2d 1261, 1262 (Wyo. 1987))

We have established, by a preponderance of the evidence, the degree of James’ disabilities are a matter of fact, and  as such, should not be downplayed or ignored by SDRC.

Ambiguities in evidence trigger the process of weighing the evidence and assessing the credibility of the witness. Latimer v. Rissler & McMurry Co., 902 P.2d 706, 711 (Wyo. 1995).

SDRC’s fight to exclude video evidence showing what James needs speaks loudly to the fear SDRC has of ALJ seeing the truth about what goes on in the home due to a lack of services and supports, and how this lack of help has placed James  in harm's way, and left his family in a state of constant crisis, with little respite.

SDRC has not done their due diligence to gather, assess, acknowledge and, review, properly document what James needs. Instead, they rely on speculation, false testimonies and ambiguous IPP and self-serving nursing assessment narratives (written by coached RN’s on their staff who have never worked with James) about James, as if his needs can be reduced to telling a story, in the absence of securing necessary services and supports “sufficiently complete to meet his needs.”

SDRC counsel suggested SDRC has made every “effort” to help keep James at home. This is a complete falsehood.

 Let me remind the court, SDRC has not made a single effort, in the absence of an ALJ ruling, in previous Fair Hearings, that they shall provide what he needs, based on evidence presented.

If indeed there has been efforts by SDRC to provide services, these minimal efforts by SDRC are no excuse for failure to comply with provisions necessary for the protection of handicapped clients. See: Rozecki v. Gaughan, 459 F.2d 6, 8 (1st Cir.1972); Gautreaux v. Chicago Housing Authority, 384 F.Supp. 37, 38 (N.D.Ill.1974)

James has a right to be free from harm. (Calif. Welfare and Institution Code 4502 (a) (j).

Ask yourself, on video evidence, does it look like he’s free from harm when one nurse or just his mother is left alone to struggle with stopping him from self-injurious behavior? The right to be free from harm is a legal right for persons with special needs.

See Eighth and Fourteenth Amendments, as well as cases such as Welsch, and N.Y. State Association for Retarded Children v. Carey (Willowbrook).
^New York State Association For Retarded Children, Inc., et al., v. Hugh L. Carey,. 393 F. Supp. 715 (1975) …”people with developmental disabilities, regardless of the degree of handicapping conditions, are capable of physical, intellectual, emotional and social growth… a certain level of affirmative intervention and programming is necessary [to honor] that capacity for growth.

SDRC seems incapable of understanding or acknowledging Jamey’s degree of disability. This chronic lack of understanding his degree of disability has resulted in insufficient services and supports tailored to his individual needs and the need to continually seek relief through numerous Fair Hearings.

 Judicial relief has not been adequate to resolve this ongoing crisis.

The sheer complexities involved in Jamey’s degree of disability should not be an excuse to ignore, downplay or avoid providing services and supports sufficiently complete to meet his complex needs. “An array of services and supports should be established which is sufficiently complete to meet the needs and choices of each person with developmental disabilities, regardless of age or degree of disability”… (Ca. WIC Code 4501)

Severely-autistic  [teens] adults are unique to any other type of developmental disability. Without treatment, services and supports, autistic people like Jamey are subject to unnecessary restraint, isolation, regression, excessive medication and denied opportunities to lead a more productive and meaningful life.

See Superior Court, State of California, County of Los Angeles, Plantiffs V. Eastern Los Angeles Regional Center.

Legislature has enacted a comprehensive scheme known as the Lanterman Developmental Disabilities Services Act (Welfare, & Inst. Code, §§ 4500-4846) to provide a 'pattern of…services ... sufficiently complete to meet the needs of each person with developmental disabilities, regardless of age or degree of handicap…(§ 4501.)

Such services include assessing their needs (§§ 4642-4643); and, on an individual basis, selecting and providing services to meet such needs (§§ 4646-4647).

Legislature has not only recognized that persons with developmental disabilities have the same legal rights…guaranteed all other individuals by the Federal Constitution and laws and the Constitution and laws of the State of California' (§4502), but has also granted them certain statutory rights, including the right to treatment and habilitation services at state expense. (See §§ 4502, 4620, 4646-4648.)

James’ family has been tireless advocates for James, repeatedly asking SDRC to respect the decision making authority of the family [as regards to what Jamey needs, since nobody at SDRC is an expert in autism, epilepsy and self-injurious in one person, nor has ever spent a week with our son).

Ca. Wic Code 4685 (b) (1)(2) It is the intent of the Legislature that respect and support the decision making authority of the family” [unfortunately, the decision makers at SDRC seem incapable of making sound decisions on behalf of our son.

In fact they have opposed every single request we’ve ever made to get him the level of care [he so desperately requires to live a more productive life].

James family does not rely on opinions to decide what Jamey needs. James family relies on years of expertise gained in directly caring for James, and thereby knowing what services he needs.

James’ family relies on facts to request services to meet his needs.

Evidence shows what he needs. Reality can’t be ignored. (SDRC has ignored his needs). Treating physicians factually document James’ needs. Evidence from video surveillance shows you what James needs. Evidence from nurses who experience the reality of working with James, testified to this court what he needs.

We also ask this court to consider it’s time for SDRC to place a high priority on the development and expansion of services and supports to assist our family in caring for James at home, while they look for this mysterious group home. Because, let’s be honest here, it’s anyone’s guess when and if a group exits that can meet James’ needs.

It’s easy for SDRC to tell an ALJ a group home exists, but those words have little meaning and truth if there is no evidence that a group home exits that can meet his needs. A group home must receive truthful information about what James needs. Recent email evidence, two days after this hearing, shows the service coordinator, didn’t tell the group home “Jacklyn’s home” about Jamey’s medical needs.

So, once again, we find, there is no truth in SDRC’s statement that there is a group that can meet his needs. We submit that SDRC will not be able to find a group home that can meet his needs, until the court clearly defines his level of care, based off the evidence and testimony showing what his level of care really is, and compels SDRC to factually document it, so a group home can receive accurate and truthful information on his level of care to meet his needs.

Research shows parents of autistic children, especially those who suffer from behavioral issues such as self-injurious behaviors, are under extreme stress, not unlike the stress common to combat soldiers.

If this does not speak loudly to the complexities and individual needs of the autistic population, what does?

It is not our fault SDRC can’t comprehend this reality, in regards to James’ severely-autistic needs, though Kathy Karin, SDRC’s witness truthfully noted, that out of 20,000 clients, she can recall only 4 people like Jamey.

Given K is in a key position to be alerted to any autistic client with extraordinary medical issues, we think K testimony is profound evidence, by SDRC, in addition to the evidence we submitted, as to why James needs an exception to SDRC’s POS policy.

Nobody who testified for SDRC is an expert in determining Jamey’s needs.

Nobody who testified for SDRC is a neurologist, psychiatrist or primary care physician.

 Conversely, Jamey’s family are experts in articulating what Jamey’s needs are.

Jamey’s treating neurologist, psychiatrist and primary care physicians possess medical expertise and provided evidence showing Jamey’s extraordinary medical and behavioral needs. As did three nurses who work with James. One nurse who testified, Katie B, has worked with James for 5 years.

 All of this is in sharp contrast to the SDRC employees who have never met James or rarely seen James outside of a 4-hour off and on glance, during a Fair Hearing, [though it's their legal duty to provide case management, conduct proper assessments and monitor services].

James’ mother has made repeated attempts to resolve issues with SDRC over her autistic son needing help, only to be ignored, over and over again and then told it’s not their policy to help people with Jamey’s type of needs.

What you then produce is a mother, already pushed to the brink of mental and physical exhaustion, stressed beyond imagination, sleep deprived, having to raise a severely-autistic adult child, shown on video forced to be her son’s nurse with no back up, be the 2:1 back up for nurses, and in the midst of all this, forced to gather evidence to fight against the very agency that claims to be in the business of helping, advocating and protecting the disabled.

It’s the definition of crazy making.

On behalf of James, we have repeatedly sought judicial relief to get support sufficient to meet James’ extraordinary needs, as per his legal right to be free from [self] harm, receive prompt medical care for his many medical needs, live a more meaningful life.

We have received no sufficient relief.

As such, judicial relief hangs in the air, not fulfilled, a wound never cleansed. A wound that continues to bleed.  Must we be forced and humiliated into videotaping every second of our son’s medical and behavioral needs before we find relief? When will the evidence ever be enough? When, is right here, now, in this instant case.

In light of all the evidence we have produced, we have met the burden of proof needed on the issues in this case. We ask that this court look at all the evidence, laws, regulations, policies, facts and testimonies provided to bring the relief so needed.

Respectfully submitted,

Kimberlee Oakley, Mother/Advocate for severely-autistic client, James Gilbert.

Case status: In January of 2015, Judge ruled in favor of 24/7 1:1 LVN respite support. Key arguments: Unusual and extraordinary needs, vulnerability of autistic patient, right to be free from harm laws, video evidence and direct caregiver testimony.

February 3, 2016

Medication linked to Self-Biting Behavior in Autism

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                       Case Example:

Who: My autistic son.
What happened: Increased self-injurious behavior (SIB) caused by new seizure medication, ONFI (clobazam)

Increased SIB began a few weeks after increase in seizure medication, Onfi, Dose: BID: 10mg 0700 and 15mg 1900

Following administration of ONFI atypical self-injurious behavior emerged:

Self-biting was so fierce he tore off an entire layer of skin from his left hand.

Why would Onfi cause an increase in self-injury in an autistic person?

It's not so much the drug itself. For some, Onfi is a great drug, but for people with autism, they can have very different reactions to medications, depending on how they react or feel to side effects.

Let's look at some side effects of Onfi:

1. Trouble swallowing (would most likely agitate an autistic person)

2. Dizzy (would scare an autistic person)

3. Irritable  (Even non-autistic people get irritable when they can't swallow properly or feel dizzy after a new medication, so times that by 100, for the autistic person)

4. Aggression (may be a form of communication, not knowing how talk and tell people they're having trouble swallowing, feeling dizzy and weak)

5. Slow thinking (majority of people with autism do NOT respond well to any medication that slows thinking...usually Gaba (a) receptor agonists and other anxiolytics)

6. Feeling weak, general malaise  (would increase agitation in autistic people)

7. Insomnia (would create a domino effect of sleep deprivation, leading to increased irritability, leading to increased self-abuse or aggression, as form of communication they aren't feeling well, and are now exhausted).

As for any drug that slows down thinking: Most people with autism don't like to be sedated. It pisses them off. People with autism are highly intelligent, despite even a low functioning presentation. They hear, see and feel things very intensely. Taking in everything around them. It's not that their brain activity has to be "suppressed" or "slowed" with anxiolytics, etc...it's that their brain activity is experiencing a dysregulation of neurotransmitters.

Biggest challenge in treating autistic patients is investigating which drugs are compatible to their DNA. There are tests for that, which are rarely used to better treat patients with autism, but should be a standard of care test in any patient with special needs who can't communicate and who has failed to respond to multiple drug interventions.

Why an increase in self biting after Onfi?
Self-biting may be an attempt to "ground self."

Trouble swallowing. No doubt would cause extreme panic in an autistic person.

We asked neurologist to reduce Onfi.

*Reduction of Onfi only moderately decreased the recently increased self-injurious behavior (self-biting).

*This is always a challenge for parents of autistic children, teens and adults.

You start a new medication for a medical issue. It causes side effects that increase your child's behavior. Now what? So frustrating! Do you keep reducing or discontinue medication?

We kept him on Onfi because he was having increased seizures. We were hoping the self-biting would stop. Meanwhile....

the challenge remained how to effectively treat open wounds caused by this new self-biting.

What we did to resolve this dilemma:

1. Asked primary care doc for PRN of Norco to get behind the pain, hopefully RAISING the pain threshold. The theory behind this being if we could raise the pain threshold for a few days, it could remove the constant antecedent pain to re-biting the same wound, giving it a chance to heal by NOT be so painful as to elicit more self-biting. Use JUDICIOUSLY and with lots of fluids and non-binding fiber, as pain meds cause constipation, another trigger to self-abuse.

2. Vigilant wound care. Keeping wound clean and covered to the best of our ability. (At one point after we bandaged self-inflicted bite wounds, we put a thick sock over his hand to protect the treated area). He tolerated the sock. Probably because it gave sensory support, mild compression, which many people with autism need when pain is elevated.

3. Offered sensory-chew tube and thick, damp towels to bite.

4. Increased crunchy foods.

5. Increased physical activity (walking) and bath time therapy to keep his stress level down.

6. Increased massage of legs to bring mental attention and comfort to another part of body, away from wound.

7. Increased staffing support to allow for prompt medical treatment of wound.

8. Music therapy. Nothing fancy here. Just turn on some favorite music.

9. When bandaging couldn't be kept on, applied intermittent sprays of Tea Tree Oil to facilitate quicker healing and prevent staph from breeding in and around wound. Then quickly covered with SOCK.

10. Packed wound with raw honey (theory here was at least if he went to bite the same wound it would taste good and maybe he wouldn't be so pissed off and keep biting it).

When ONFI appeared to bring little relief to increase seizures the decision to DISCONTINUE ONFI was clear: GET RID OF IT.

It wouldn't make sense to keep our son on a new seizure medication that wasn't stopping increased seizures AND was produced side effects that caused him to bite himself. No brainer here.

Result: He eventually stopped self-biting. (Took several weeks post discontinuing ONFI and several ABA therapy sessions).

However, you would be shocked to know how many people with autism, across this country, are kept on drugs that aren't helping and actually causing MORE problems, simply because nobody in charge is analyzing the situation or paying attention.

Kim Oakley