2:1 Staffing Support Issues for Severely-Autistic Adults

When 2:1 Staffing Needs are Needed with Autistic Adults Living at Home: How Do Parents Get Respite?

Let me answer that for you: they don’t.

Here’s an example, this morning I ran downstairs—as I have done on many mornings when I hear my severely-autistic son hitting or slapping his legs—to help the vocational nurse (LVN) on duty.

Immediately, I run into son’s room and grab arm warmers, aka running compression sleeves, to provide an acute sensory intervention to his arms. LVN and I apply sleeves.

Theory behind placing these sleeves stems from research I discovered while doing hours of research and racking my brain on better ways to comfort my son during self-injurious behavior (SIB).

As we apply 2^nd compression sleeve, the SIB lessens. Since this doesn’t completely stop SIB, I figure new abrasion on face that happened yesterday at his day program is causing pain.

Abrasions STING. Autistic people, just like typical people, don’t like pain. Only in my son’s case, pain will trigger more SIB.

“I’ve already applied bacitracin ointment,” says the LVN. Great, but that won’t stop stinging sensation from abrasion, I think, so I suggest we apply Dermoplast Anti-bacterial spray, which DOES stop stinging. Again, what would we do for ourselves, right?

So, while LVN offers my son another sip of water, I go grab Dermoplast. LVN slips on gloves, sprays Dermoplast on glove and gently wipes it on facial abrasion.  This brings relief. My son is now calmer. We know this because he’s not vocalizing as loud, and it gets LOUD, nor is he trying to slap his hips.

Next, I remind nurse (he’s new, nurses that have worked here for a few months know what to do) that because my son is slapping his hips, we need to put on Hockey Adult Hip Pad protectors. Pads I purchased last year after researching how to protect this part of his body during times he targets his hips during SIB. Pads go on. This is considered an acute and pro-active intervention.

What more for pain? “I gave him Advil with breakfast,” says LVN. Love it when nurses think of nursing care without me having to micro-manage every inch of my son’s life. Nurse is a keeper! YIPPEE.

Next, I suggest we place my son on a soft chair and turn on TV, so he can watch the weather, which he seems to enjoy watching. Perhaps, he likes colors on TV or it maybe he really likes to watch the weather. Don’t we?

Additionally, the LVN runs and grabs my son’s sensory chew tube (a sensory device an Occupational Therapist suggested years ago and which is one of the best therapeutic tools we have) and special weighted blanket ( I found blanket a few years ago in a special education magazine).

Yep, when my son engages in SIB, I take, what I call, the Blitzkrieg approach. Try everything in an arsenal of therapeutic tools, to QUICKLY mitigate SIB. That way, at least one— or a combination of interventions— is most likely to help. Think. Act quickly.

Notice the word QUICKLY. This has been a problem for some nurses. They don’t move fast enough to implement what is needed. Unless they’ve worked in an ER or psych unit, it’s not something they learn in nursing school. It’s not their fault. They have to learn to do this. Nursing schools don’t teach nurses to work with autistic patients. It would be awesome if San Diego Regional Center would send people to train nurses to deal with behavioral issues. But, there’s a problem.

San Diego Regional Center has, in the past, sent DOZENS of “behavioral specialists” to help with my autistic son. Not one ever came up with anything to help. This is no exaggeration. I have the documents to prove it.

If they did write anything that helped, it was interventions that I was already doing and they put in the report, as if they thought of it. Nice. Suffice it to say, I lost all hope in SDRC’s behavioral specialists.

Okay, so we “get the picture” about how 2:1 staffing is often needed in a home that has a severely-autistic person with self-injurious behavior and epilepsy living in it.

SDRC and other policy makers don’t want to hear that 2:1 is needed for some autistic people. Nor do they want to read that the PARENT is providing this support and thus, not getting the respite they need. IF they acknowledge this, they must act.

No doubt, any person from Regional Center reading this is thinking and self-righteously espousing that my autistic son, because he requires such intense support, should be in a group home or a state institution.

SDRC doesn’t like to provide creative solutions to keep autistic adults from ending up in institutional care.  That’s why families are forced to fight for what their autistic children need. 

For example, a CREATIVE SOLUTION for my son would be providing a behaviorally trained respite caregiver to work, for a few hours a shift, along side nurses who are already working with my son. This creative support would further help him stay home.

SDRC has never thought of this, and would fight it, though it is a logical, creative support, based on my son’s unique needs. They’d rather ignore this unmet need and lurk in the shadows, hoping I’ll have a nervous breakdown. Oh, she can’t mean that, really would they do that? Yes, they surely would, they have done it to many families.

So let’s get back to this: Behavioral trained caregivers aren’t nurses, so their focus is addressing behaviors. These behaviorally trained caregivers come from vendor approved agencies that provide respite care for “individuals with challenging behaviors.”

Instead of providing a creative support like this, San Diego Regional wants me to be this in-home constant behavioral support. And I am. It’s exhausting. I don’t mind providing episodic support, but I’m doing this on a daily basis. I’ve done it for YEARS. I need people to NOW implement what is already there, what I already have in place to be done. I shouldn’t be expected to constantly and continually provide physical support to nurses who work with my son. Isn’t it enough I do hours and hours of research and advocacy to help him? Isn’t it enough I manage his medical care and arrange his doctor’s visits and order and pick up his medications? Isn’t it enough that I spend thousands of dollars on special foods, shampoos, bath salts, shoes, bedding, clothing, transporting him to and from doctor’s appointments, getting vitamin B shots, buying aromatherapy oils, nutritional supplements and sensory supports? Isn’t it enough I advocated for his nursing care and adult day program? I guess not. Now, I’m expected to be the 2:1 PERSON to help nurses, though I’m supposed to have the nurses here so I get respite.

How can a day nurse take my son to the mall, unless I drive them there and stay, if he’s having a tough day? How can a nurse stay at a park with my son, if his behavior is unpredictable, let’s say a loud noise triggers SIB? And the nurse isn’t home to put him in bath, or hot tub to mitigate SIB? Well, then that means the nurse and my son are always here at home and we don’t have a home to get any respite in. These are things SDRC doesn’t want to hear or acknowledge. Their answer to this is put him in a state institution. There is a creative solution to his issue.

In autistic cases like my son, where you have BOTH medical AND BEHAVIORAL issues, you must address and support BOTH inside the home, which is the least restrictive setting. If you don’t, the family isn’t getting the respite they need.

This is a reality that has long escaped the San Diego Regional Center.

This agency behaves as if autistic people with serious behavioral and medical issues don’t exist.

If they admit they exist, they have to think. They have to do something. That’s why they DESPISE videos I make of my son. It’s too much reality. It exposes the actual needs of autistic people who suffer from self-injurious behavior and epilepsy. These agencies like to manipulate reality by understating individual needs on pieces of paper that get filed and forgotten in computer folders.  

San Diego Regional Center (SDRC) case managers love to write in the IPP contract all the things the PARENTS should do. And minimize, downplay and omit words that hint of any responsibility on their part. It’s a game they’ve played for years. And when you call them on it, they don’t call you back. That’s how they deal with everything. They feign ignorance. They evade. Then the top officials at SDRC you need to talk to disappear. They’re either “at lunch”, “in a meeting”, “on vacation” or “at another seminar.” That’s why Protection and Advocacy and Office of Client’s Rights Advocacy (OCRA) exist. They know how SDRC operates.

The reality is SDRC has NOT— despite years of knowing severely-autistic adults exist—established a stable community or home support system for autistic persons with medical and behavioral challenges.

Case in point: my son’s case worker sent me a list of independent vendor approved nurses. List is 8 pages long, with about 100 nurses on the list. The list shows what location in San Diego each nurse can work. It also shows what ages they will work with. Out of almost 100 names of nurses, I see a few who work in our area and ONE— yes ONE— that lists “behavioral issues ok.”

If autistics and other developmentally challenged individuals in the SDRC system HAVE both medical and behavioral issues--WHY isn’t SDRC recruiting nurses who deal with “behavioral issues?

My guess is if they don’t establish a pool of nurses who can offer families living with severely-autistic adults home support, it’s another opportunity to say the autistic adult is “unmanageable” at home and should thus be placed in an institution, where, or course, they’ll be drugged, shackled and hidden from public view. And SDRC can forget all about them.

Lastly, let’s talk about the 3 Nursing Agencies that are listed on SDRC’s vendor list. I got this list a few days ago. Only 3 agencies. Out of those 3, we already tried one. And this agency sent us a CNA who turned out to be unlicensed, though they sent him here for months. And they sent us LVN’s that were physically so out of shape, they couldn’t handle Jamey. And, they would often tell us, there were no nurses available for certain shifts. Sweet. I called another and the number is disconnected, which is how SDRC likes to remain, disconnected from the realities of people who live with autism, self-injurious behavior and epilepsy. Things need to change, and fast. 


Another issue the public isn't aware of nursing agencies don't like to share cases, due to liability issues. Hence, this LIMITS resources and supports that can provide nurses to the consumer, who is my autistic son. 

For example, for the past year, not ONE nursing agency vendored by Regional Center has been able to provide a CNA (certified nurse assistant). So then what do you if you have shifts that are intended to be covered by CNAs? You don't get coverage, that's what happens. You are then forced to use appropriate creative supports so you can get a break. 

The crazy thing is that San Diego Regional Center keeps telling me to call all these agencies when they admitted they know agencies won't share cases. So you are stuck with an agency that can't find you a CNA or sometimes even an LVN. If you go to another agency, which I have tried, they too have no nurses matched for Jamey's unique and individual needs. 

The bottom line is we are doing our best. We can't do everybody's job. We don't have the resources to go out and recruit, train and hire nurses for agencies. If we use an LVN from a Regional Center Vendor list, it's limited, as there are only TWO we've found from 100's of names given to us. And when they came here to interview, they said the Regional Center paperwork for them to get paid is unclear. 

So here you have it. The realities of getting nursing care when you have an order from a judge saying that this is what is needed. As if parents aren't stressed enough, they are now expected to figure this all out while some at Regional Center drift off into a fantasy world and pretend like it's just okay. Let's talk and have another meeting. Yea, sure, just like the 990 other meetings where they sit in talk in circles and ask the same questions they've asked before, but are now saying they've never been asked. No thanks. 

As always, we are forced to secure coverage, make phone calls to the agency we now have to find nurses and CNAs and interview the few nurses off the Regional Center list. 

Nobody at Regional Center seems to understand the realities of living with severe autism that includes medical and behavioral issues. 

Nor do they understand what is needed in special circumstances, as in when you are repeatedly told there are no CNAs or LVNS to cover open shifts. 

What does it take for these people to understand?