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June 21, 2013

California Law: Protecting Children, Teens and Vulnerable Adults with Autism

People with autism must be protected. Knowing the law helps you fight for their right to be "free from harm," a basic human right, which includes, the right to be from "self-harm" rooted in autistic behavior.

Where the following laws apply: California

Who should be familiar with them? 

Parents, advocates, attorneys or anyone concerned about safeguarding the rights of children and adults with autism (or any developmental disability that qualifies them for California's Regional Center services), which they are entitled to by law. 

These laws are found under the Lanterman and related Welfare and Institution Codes.  

Which agencies are charged with the duty to provide supports and services to children, teens and adults with autism? 


What are California Regional Centers? There are 21 regional centers scattered across California. All of the Regional Centers are incorporated as 
Internal Revenue Code section 501(c) (3) nonprofit organizations with a board of directors representing each RC’s service area. 

Each one operates from a contract with California Department of Developmental Services (aka DDS). Regional Centers contract with DDS
Part of that contract includes, pursuant toWelfare and Institution Code,
4640.6. (a) "...approving regional center contracts, DDS shall 
ensure that regional center staffing patterns demonstrate that direct service 
coordination are the highest priority

(b) Contracts between DDS and Regional Centers shall require 
regional centers implement an emergency response system that ensures 
a regional center staff person will respond to a consumer, or individual 
acting on behalf of a consumer, within two hours of the time an emergency 
call is placed. This emergency response system shall be operational 24 hours 
per day, 365 days per year. 

This is probably one of the biggest complaints I hear from parents. "Nobody from the regional center calls me back." Or, "they call back weeks later and give me someone else to contact." 

Regional Centers receive over $3.9 billion in federal and state funds and are supposed to serve Californians with 
developmental disabilities. 

Regional centers are not what the public thinks they are.

 Unless you have witnessed how a regional center can operate from the inside, you won't know. You will only read the regional center's blissful brochures, masked mission statements or idyllic internet advertisements, and you will think, gee, this sounds groovy.

 You will not see what happens when a child becomes a "consumer". 

You will not see internal emails passed back and forth between a brigade of bumbling bureaucrats. 

You will not see the groupthink. The apathy. The arrogance. The benign neglect. 

Despite protection and advocacy for the disabled being a part of every Regional Center's Mission Statement:  Regional Centers do little advocating for the disabled.

*

It may also surprise you that Regional Centers have no specialized units that are trained in case management for clients or 'consumers' with autism, especially severe autism. 






Keep fighting for your child's rights. At any age. Never give up. Even if you lose some battles, keep fighting. You are your child's voice. If you can, get an attorney. Few attorneys know this system, but they can learn. Keep fighting. 

Services and supports are there. You have a right to ask for them, based on the level of care your child needs. 

Please don't ask for more services than your child needs, 
And, to be fair, try to get services from generic  (i.e. insurance carrier) before asking your regional center for services. 

My autistic son is severe (though he is incredibly smart and can walk up to 13 miles a day). He also has self-injurious behavior and seizures. In essence, he needs a lot of support and services. 

If your autistic child is mild, be thankful. 


If your autistic child is able to independently play on an IPAD, communicate freely, dance, play soccer and has no need for 1:1 protective supervision, don't pretend they need these services.

And don't get me started on the parents who think their children are autistic, but have never been officially diagnosed with autism, and are pushing for the same services needed for a truly autistic child, teen or adult. Be sensible. 

Be fair. If you're child isn't truly autistic, please stop asking for autism services. There are other services and supports you can get. And if they don't exist. Write your congress[wo]man. 




Likewise, learn laws that can help you fight for your autistic child (at any age). 
WIC stands for Welfare and Institutions Code. 

These laws include:

"Regional Centers shall consider ever possible way to assist families in maintaining their disabled child at home." They should not force you to place your autistic child, based on the severity of their needs. No parent should be forced to place their child in an institution or out of home placement because the Regional Center can't or won't secure proper services and supports so they can live at home. CA WIC Code 4685, subd. (c)

  "If the parent of any child receiving services and supports from a Regional Center (RC) believes the RC is not offering adequate assistance to enable the family to keep the child at home, the parent may initiate a request for fair hearing...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)


   "It is the intent of Legislature that Regional Centers provide or secure family support services that do the following: 

       1. Respect and support the decision making authority of the FAMILY.

       2. Be flexible and creative in meeting unique and individual needs of families as they evolve over time.

       3. Regional Centers shall give a very high priority to development and expansion of services and supports to assist families that are caring for their children AT HOME. CA. WIC Code 4685 b, 1-4 (c).  

(Not tell Administrative Law Judges that you don't have enough group homes or respite workers to help families. Put your heads together and follow the damn law. Start developing and expanding. Be creative. Quit going to Sacramento with sob stories about broken budgets and expecting a different result. 

They don't care. You must make them care. You need to SHOW legislators why your Regional Center needs more funding based on your specific CLIENT's needs, in the same way we parents show YOU--at the regional centers--  what our kids need and aren't getting. 

                                         *
  
  Federal Funds:

When a state agency receives federal funding, similar to Regional Centers receiving federal funding for 1915 (c) waivers from Medicaid, the agency must adhere to federal law and requirements. 

The only discretion Medicaid has given to California is the number of of regional centers clients on the Waiver. Nowhere in the test of 1396 (c) (4) (b) does Medicaid give the state or Regional Centers the discretion to RESTRICT the amount of respite it provides to persons on the 1915 c waiver. 
                                         ***

  Regional Centers get state and federal funds:

"No person by reason of disability shall be excluded from participation in, be denied benefits of, or be subjected to discrimination under any program which receives public funds."  CA WIC code 4502 

    No Gaps in Services:

CA WIC CODE 4501: " The state of California accepts responsibility for persons with developmental disabilities and an obligation to them which it must discharge....The complexities of providing services and supports to persons with developmental disabilities require coordination of services of many state departments and community agencies to ensure that NO GAPS OCCUR in communication or PROVISION of services and supports...an array of services and supports should be established which is sufficiently COMPLETE to meet the NEEDS..regardless of age or degree of disability"


Right to be in Least Restrictive Setting:

    "It is the intent of Legislation that persons with developmental disabilities have a right to treatment and habilitation services and supports in the LEAST RESTRICTIVE SETTING (typically the least restrictive setting is the natural home, living with parents or a group home, not a state mental hospital or state institution)" CA WIC code 4502 (a)

  "In order to achieve stated objectives in consumer's IPP (individual personal plan) the Regional Center shall....SECURE NEEDED SERVICES AND SUPPORTS."  It is intent of Legislature that services and supports assist individuals with developmental disabilities in achieving the greatest self-sufficiency...Regional Centers SHALL SECURE services and supports that meet the needs of the consumer, as identified in IPP (this explains why so many Regional Centers avoid writing  or downplay what your child needs in the IPP). CA WIC Code 4648 (a) (1)

IPP=Individual Program Plan. This is similar to the Individual Education Plan (IEP) at public schools. 

                                         ***
   What if my child gets IHSS? 

Regional Centers often try to argue if a parent has IHSS they should hire IHSS workers if they want 'respite breaks'. 

However, IHSS care providers are not required or trained to deal with severely disabled clients that require higher levels of care, therefore it creates a safety issue for many families to insert a general IHSS provider into the home for parents to 'get a break'. 

Likewise, IHSS recipients needing protective supervision cannot obtain enough IHSS funding for 24 hours every day of the month, leaving serious gaps in coverage. I.e...if there is an average of 732 hours in one month, and you only get 273 hours of "protective supervision" then it is illogical to assume this 273 hrs a month is supposed to be 24/7 support. (See Office of Administrative Hearing (OAH) case 2012050405). 

   
For parents of adults with autism living in California: 

Unlike caregiving requirements expected of parents of children under 18 yrs old. the Lanterman Act says nothing about a family's responsibility to provide nursing care for an ADULT child living at home (OAH case 2011100366). 


12. CA. WIC CODE 4640.6. "In approving regional center contracts, the Dept. of Developmental Services (DDS) shall ensure that regional center staffing patterns demonstrate that direct service coordination are the highest priority." 


  CA WIC CODE 4648 (5)"In order to ensure maximum flexibility and AVAILABILITY of appropriate services and supports, the Department of Developmental Services SHALL establish and maintain an equitable system of payment to providers of services and supports identified as necessary to the implementation of a consumer's IPP (individual program plan). 

  Ca WIC CODE 4648  (e) When necessary to expand availability of needed services of good quality, a regional center may, 
   1. Solicit an individual or agency with a request for proposal or other means, to provide needed services or supports not presently available. 
    3.  Use creative and innovative service delivery models.....
    (g) Where there are GAPS in the system of services and supports, or where there are identified consumers for whom NO provider will or can provide services....the Department of Developmental Services may provide the services and supports directly. 

    The Department of Developmental Services and the Regional Center are presumed to exercise their power in conformity with the requirements of the law. If either acts unfairly, the law presumes the fault lies with it, and not the statute empowering it. Constitutional guarantees against arbitrary and discriminatory action by the Department and/or the Regional Center, are read into the law. (Butterworth v. Boyd (1938) 12 Cal.2d 140, 149.)


     "Services provided must be cost effective, and the Lanterman Act requires the regional centers to control costs so far as possible, and to otherwise conserve resources that must be shared by many consumers. (Welf. & Inst. Code, §§ 4512, subdivision (b), 4640.7, subdivision (b), 4651, subdivision (a), 4659, and 4697.)"

This does not mean that the services will be so inefficient that they end up costing a person's life, as we've seen many times when an autistic person is placed in a group home without identified and funded services and supports. See, that's the game that is often played, you might not know. Regional Centers will omit what an autistic person needs in an IPP, even though it's their right to have what they need written in the damn IPP. 

So then you have to fight them about what's NOT written in the IPP. Or what the service coordinator was told by 5 other people in another unit not to write in the IPP, so they don't have to fund it. 

Never sign an IPP until you have fully read it. And it's a true reflection of what is going on in your child's life. And what you told them your child needed. Don't waste your time calling your service coordinator to discuss it. Get all her supervisor's emails and put your child's needs and your requests, in writing. 
                                             *






What if my child is placed in a residential care facility or group home? 

Who is responsible for monitoring their health and safety? 

Ca. WIC CODE 4742 (a): The regional center shall guide and counsel facility staff regarding the care and services and supports required by each consumer served by the regional center...monitor the care and services and supports. 


San Diego Regional Center has a list of "vendored" LVNs and RNs. Great. However, they think by simply having a service provider LIST with names and LVN/RN titles on it, this is evidence they are providing services. 

Not so. If you analyze the SDRC LVN vendor list and call the nurses, you will quickly discover that many aren't able to provide sufficient services to consumers with autism. 

Some nurses say they are physically unfit, can't lift or bend. Others have medical issues of their own. Or are no longer vendors, which is odd, since they are still on the list, as if providing services. 

This is not consistent with the law: 

"The Legislature finds that the mere existence or delivery of services and supports is, in itself, insufficient evidence of program effectiveness...it is intent of legislature that agencies serving persons with disabilities shall produce evidence that their services have resulted in consumer and family empowerment and in more independent, productive and normal lives..." Ca. WIC CODE 4501



Families rely on the quality of service providers listed on San a Regional Center's extensive 'service provider', aka, vendor list. 


Fact few people know

IF a regional center consumer receives services solely from regional center vendored LVNs, there is NO home health agency involved that provides an RN to supervise vendored LVNs. That means there is no nursing plan of care in place. 

Hence, it is reasonable to expect a regional center provide an RN off the same vendor list, to write a plan of care for the LVNs to follow, in order to protect their health and safety, and ensure a continuity of care among all vendored LVNs, correct? 

                                    *

Other facts about San Diego Regional Center (SDRC): SDRC provides an 'orientation' to newly vendored LVNs. At this orientation, SDRC vendored LVNs are mostly told how to bill for services, keep copies of notes, and fill out paperwork on an internet portal to get paid. SDRC makes little if any effort to ensure a nurse is a good match for a consumer's needs. 

The mere existence of a NAME of a nurse on a list, without the slightest regard for whether the nurse still exists, or can meet the regional center client's needs, seems to be the only thing that matters. Very strange, as if nobody is manning the ship. 

                                       *

More inside information into some Regional Centers:

Nursing assessments: I can't speak for all Regional Centers, but San Diego Regional Center is notorious for neglecting to do real nursing assessments. 

For example, they will have an RN from their clinical services unit randomly CALL a family and ask a few questions about medications, seizure activity, etc...and then pretend this was an ACTUAL nursing assessment. 

By law, this drive by phone call and gathering of minimal info is not a real nursing assessment. 


                                             *

Q. Do Regional Centers receive federal funding to serve consumers with developmental disabilities? 

A. Yes. One such funding is Home and Community-Based Services Waiver (HCBS).  The Department of Developmental Services (DDS) has delegated the following responsibilities to the RCs to ensure that the HCBS waiver requirements are met: 

1. Ensuring that HCBS waiver participants (regional center consumers) meet the level-of-care criteria. 

2. Developing and implementing a written "Plan of Care"  *Plan of Care here is not a nursing plan of care, it's the regional center IPP. An IPP isn't a MEDICAL or BEHAVIORAL plan to care for the consumer, so this language is very odd. An IPP is mostly a summary or services or descriptive narrative.

3. Ensuring adequate safeguards exist for service providers. (San Diego Regional Center has flubbed this one up several times in many, many cases, resulting in severely-disabled clients being killed, abused and neglected). 

4. Ensuring eligible consumers are given a choice between receiving care in 
an institutional setting or in a home and community-based setting. 

5. Ensuring HCBS waiver participants are notified of their appeal rights (parents are seldom educated on appeal rights)

6. Ensuring a system for monitoring provider standards, IPPs, and quality of 
care and service. 

7. Providing HCBS waiver services in accordance with the service definitions 
and provider qualifications  

8. Ensuring HCBS waiver services have prior RC authorization and are paid for in the manner specified by the DDS. 

9. Educating parents about the benefits of “institutional deeming” and helping them complete the application and renewal processes 

                                               *The Home Community Care Based Service (HCBS) waiver is the largest single source of federal revenue for California’s developmental services system, with over $1.7 billion anticipated from this fund source. 

The federal government typically reimburses the state of California 50 cents for every California Regional Center dollar expended for "waiver billable service". 




                                        *

There is an administrative law system in place that allows parents to fight the Regional Centers for needed and denied services:

See OAH hearings: 
http://www.dgs.ca.gov/oah/DDSHearings/DDSDecisions.aspx

Yet, we find regional centers telling media that they 'advocate' for disabled. That doesn't make sense when they oppose what a person with special needs is asking for in a court hearing, does it? This doesn't make sense when the Regional Center has attorneys that will fight parents and argue that the child doesn't need services. Most parents have no idea how to fight back. They get trampled. And their kids get nothing. 


Occasionally, an organization, such as Protection and Advocacy or Disability Rights gets involved, but some of them are funded by DDS (the Department of Developmental Services in Sacramento), the same funding agency that funds ALL the Regional Centers. Strange, isn't it? Bet you didn't know that. 

Bet you also didn't know that DDS makes some of these "advocacy" organizations sign a contract that they won't APPEAL any decisions if the parent's lose. 
                                 
                                         ***


When my autistic child turns 18, do I still have to provide the same care I would be expected to, as if they weren't considered "an adult?" Answer: No. 


"There are a number of references in the Lanterman act to natural supports, 
which include family. Section 4512, subdivision (e), for example, provides a definition of 
natural supports. Section 4646.5, subdivision (a)(4), provides that an individual program 
plan (IPP) shall include a schedule of services and supports to be provided or obtained and 
shall identify who is responsible for providing or obtaining them.

 An IPP may provide that 
natural supports, which include family members, are responsible for providing or obtaining 
them. However, there is no provision requiring family members to provide services and 
supports to a child with developmental disabilities.

  There simply is no requirement that a parent support his or her adult child. (most families do support their adult autistic kids, but regional centers can't use that as an excuse to DENY much needed services or supports.)

  The regional center acknowledges that claimant’s father and stepmother are not obligated to maintain claimant in their home or provide care for him
Source: OAH No. 2011100366
http://www.documents.dgs.ca.gov/oah/dds_decisions/2011100366.084.pdf

Ca Wic Code 4648 (16) (d) (1) (2) 
"In  order to increase the quality of community services and PROTECT consumers, the regional center shall....
"Identify services and supports that are ineffective or of poor quality and provide or secure consultation, training, or technical assistance services for any agency or individual provider to assist that agency or individual provider in upgrading the quality of services and supports...." 


Can Regional Center's authorize an "emergency vendorization" to provide your child with needed services in place? 

 What is emergency vendorization?
A. Emergency vendorization allows a regional center to approve vendorization of an applicant prior to completion of the vendorization process if the regional center determines that the health or safety of a consumer is in
jeopardy and no current vendor is available to provide the needed service.


****************************************************************************************

Who is responsible under law to Monitor care, services and supports of San Diego Regional Center Consumers, when they are placed in residential care facilities? 

A. San Diego Regional Center 
June, 2015. Let's not forget recent death of James Curtis Harris, son of Sally Winters. Sally Winters was a tireless advocate for her son. She fought long and hard to protect him. Sadly, a few years ago, after losing a Fair Hearing with San Diego Regional Center, Sally's son, Curtis, was placed in a residential care facility/group home vendored by the San Diego Regional Center. Inside this group home, which of course Regional Center should've been overseeing, Curtis got injured. That injury led to hospital stay, which led to complications, which led to his death. 

 Nobody has been charged with the neglect (which caused a broken leg which led to a hospitilization which led to his death) of James Curtis Harris. Probably because there are so many incompetent do nothings working in the system supposedly protecting and advocating for disabled, they don't want to ask the right questions, lest they have to start thinking. We're talking about people who don't even know what or who to ask. And they're assigned to "investigate" abuse of disabled. No wonder the abuse, neglect and deaths of disabled in residential care facilities is a pervasive problem. Video surveillance should be MANDATORY IN ALL RESIDENTIAL HOMES FOR developmentally disabled, vulnerable adults, who are clients of any of state's 21 Regional Centers. 

TO LOOK UP GROUP HOMES THAT HAVE RECEIVED CITATIONS BUT ARE STILL OPERATING: 
WHO is supposed to investigate group homes for disabled adult clients? ANSWER: IF the adult client with developmental disabilities is residing in a Level 1-4 home, it will ilnclude:

CALIFORNIA DEPARTMENT OF SOCIAL SERVICES

Division: COMMUNITY CARE LICENSING DIVISION
CCLD Regional Office7575 METROPOLITAN DR. #109
SAN DIEGOCA 92108

The regional center or its designated representative shall (a) guide and counsel facility staff regarding the care and services and supports required by each consumer served by the regional center;  and (b) monitor the care and services and supports provided the individual to ensure that care and services and supports are provided in accordance with the individual program plan. - See more at: http://codes.findlaw.com/ca/welfare-and-institutions-code/wic-sect-4742 (CALIF. Welfare and Institution Code--4742)
When it comes to protecting the disabled population, CCL division, by no fault of their own, is not a group of schooled and trained investigators. 

These people from CCL basically have zero idea what the hell is going on when it comes to investigating reported abuse of disabled. They're mostly concerned about the temperature of water in the bathtub. And whether they can check a box to say there was food in the frig. 

These gals and guys at CCL do a 25 minute  "review of records; go back to their offices, write a "State of California" "Health and Human Service Agency" "facility evaluation report" and disappear into another desk. 

They have no expertise investigating serious matters. They have no idea the kind of crap that goes on inside these places or what to look for, ask, or dig into. 

Nobody from CCL division is doing any investigation here. It's a casual OBSERVATION, which explains why there continues to be so many abuse, neglect, rape and unexplained deaths in residential care for vulnerable adults. 


https://secure.dss.ca.gov/CareFacilitySearch/


But it's not just San Diego County CCL's responsibility to supervise a group home/residential care for developmentally disabled. The MAIN responsibility is on San Diego Regional Center because they "vendor"all the group homes for developmentally disabled adults within San Diego County.  (See Ca. Welfare and Institutions Code 4740-4748)

The recent neglect, which led to death (June, 2015), of James Curtis Harris (aka, resident 1) a vulnerable adult living in a residential care facility vendored by San Diego Regional Center, should be carefully examined. What role did San Diego Regional Center play in this neglect? Will SDRC try to make the vendor the scapegoat? Who from SDRC was monitoring "Curtis" at this Nala's, aka Jaclyn's home residential care facility? The program manager? Service Coordinator? Who? Did the group home ever ask Regional Center for supplemental staffing for Curtis? Did SDRC deny it? Ignore it? 


IRONICALLY, the same residential home where Curtis lived, is the same home my son's San Diego Regional Center service coordinator told me last year was a residential home that could meet my autistic adult son's needs, despite it not being home that can handle people with medical issues.

This is how reckless some Regional Center staff can be when it comes to securing and monitoring services for disabled.

And this has been a pervasive problem over the years. There's been no relief in this area. No justice. No improvements.

Why? Because there's no accountability for Regional Centers.

They aren't fined.

They aren't fired. Regional Center staff is fondled by a cognitively crippled groupthink social service system that has never taken the time to appoint anyone to investigate or effectively remedy this mess.

There needs to be an internal affairs department in every REGIONAL CENTER in California.

June 5, 2013

Autism and Eating Chocolate: Self-Medication?

Award Winning Non-Fiction Blogs - BlogCatalog Blog Directory Autism and Chocolate: What’s the Connection?

My autistic son Jamey has rarely liked eating chocolate. However, recently, he’s been obsessed with chocolate pudding, chocolate candy and chocolate almond milk. So, naturally, I have to ask myself, why? Why chocolate?
Research shows chocolate elevates serotonin and dopamine in the brain. Chocolate can also lower blood pressure, which may help calm the overactive nervous system in the autistic person.

Dark chocolate has especially interesting properties, in that it’s a powerful antioxidant and serves to thwart formation of free radicals. As most autism parents are aware, increasing antioxidants is a proven health benefit for autistic children. Is my son trying to self-medicate? Increase feel good neurotransmitters in his brain by seeking out chocolate? When an autistic person can't communicate, a sudden change in food preferences could be a sign of self-medicating. Research from Swinburne University of Technology found polyphenols in dark chocolate increase calmness and enhance mood. Dr. Oz suggests dark chocolate speeds up bowels. Some autistic people suffer from chronic constipation rooted in chronic anxiety. Hence, chocolate would be a win win in this situation. 


Interestingly, dark chocolate has cardiovascular benefits, derived from catechin and gallic acid. Gallic acid, as an antioxidant, protects human cells from oxidative damage. With autism research showing oxidative damage exacerbates aberrant behaviors in autism, why not offer the child some chocolate? Word of caution: if your autistic child is on a diet that restricts oxalates due to a risk of forming kidney stones check with your child’s doctor before offering chocolate.

Gluten free chocolate is the best choice, given gastric issues facing autistic population.  

Good places to find gluten free chocolate for your autistic child:

1.      Trader Joes
2.    Sprouts Farmer’s Market
3.    Whole Foods Market
4.    Gluten Free Dark Chocolate Candy Bar from Glutino
5.     Gourmet Gluten Free Chocolate: http://www.vosgeschocolate.com/category/Vosges-Gluten-Free-Chocolate-Gifts

Kim Oakley