News Alert: Pro Self Determination? - Urgent Action Required

URGENT Phone Calls Needed Today!!! PASS SENATE BILL 468 THE STATEWIDE SELF-DETERMINATION PROGRAM SB 468 is in danger and we need your help NOW to keep the bill alive.     Call Senator Steinberg Today!!! Senator Darrell Steinberg President Pro Tempore senator.steinberg@sen.ca.gov Tel: (916) 651-4006  Fax: (916) 323-2263 We need to flood the offices of key Senators with calls from families, consumers, providers, and others from the disability community to show that we want more choice and freedom.   We want Self Determination! You will need to give them your name, address and phone number. You Can Make A Difference!!!!!!! For more information Contact Caroline Wilson at execdirector@autismla.org Autism Society of Los Angeles The Autism Society of Los Angeles is a non profit organization dedicated to "Improving the Lives of All Affected by Autism" here is Los Angeles County.Visit us on the web at www.autismla.org

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Week 6 Lesson’s from Nicky "Can you define happiness for another person?"

Nick goes one step farther, he doesn't
see the imperfections! 

Can we define happiness for another person?  I’m pretty sure I did, before Nicky opened my eyes. For example I assumed that people with severe disabilities, or special needs didn't, or couldn't live a happy life. I felt sad for their life, a life not at all like mine, a "typical" person.  Now 13 years into my journey with Nicky I see how ignorant I was, and I wonder, as I look at all of us with our typical lives, who's happier? So, I did a little compare and contrast. 

Here's me;  I'm happy I have a wonderful family, and I don't need for anything AND the my life is also full of responsibilities, stress and concerns. Not the least of which is I am good enough and will I have enough. I've worried or stressed about my job, my relationships, my security, taking care of my children, making enough money, wearing the right cloths, saying the right things, staying fit, credit card bills, divorce, being alone, was I polite enough to the person who served my food or helped me check out at the grocery store, cleaning the house, being good at my job, my sisters, my mom and of course the future. I get my feelings hurt, I put meaning to things that happen to me (the old he/she did this because), I carry the baggage of my past with me, and the list goes on. 

Here's Nick;  He's happy, he doesn't hold any grudges, getting back at someone is a concept totally unknown to him, he is free from the typical humanville baggage that comes from “how we think things should be” he laughs happy hysterical laughter every day at simple things, he's always happy to see people he loves,  he doesn't judge anyone, he loves all of us unconditionally. He gets frustrated about things in the moment has his tantrums and meltdowns, and when he recovers it's over. He's not worried about getting his drivers license, gang violence, drugs, wearing cool cloths, having a hot bod, great hair, saying all the right things or all the peer pressure stuff teens endure.  He seems to have no worries about the future, or distressing thoughts of what people think of him and I kinda doubt that he has any baggage!  Nicky is truly deeply happy and his greatest worry is…will he earn free-time, will he get more French fries and chicken, who will come to work/play with him, when will his sister come home, how can he sneak books, internet, videos or markers, and will today be a day we will let him make a list or go to the zoo or the library.  

I don’t know about you, but when I look at the lists side by side it's obvious he's happy and maybe even happier.  Once again…”I’m just saying J” 

Ten Things NOT To Do In An IEP Meeting!!

My Top 10 IEP "No No's"

I don't know about all of you, but Nick's  first IEP, was also my first IEP and I made mistakes. Since then I've made more, and I've heard about the most common ones other parents make. Here's ten "Not to do's" to help you on your journey.  

1.  Believing the professionals are the only experts.

Although most parents do not have a background or degree in education, but that's not what makes them an expert when it comes to their child. we are the best experts for our kids. We know our children better than anyone. That's the position we have to take and that's the role we have to prepare ourselves to play. It's the knowledge and experience regarding their child not a credential or degree. Parents are experts in their own right; they also provide historical information and the big picture from year to year. They know what works and does not work with their child and can be a great asset to the IEP team.  http://autismdaybyday.blogspot.com/2011/03/real-autism-experts.html

2.  Not keeping records and making requests in writing.

Just the "Facts" Mam! -  Parents should never underestimate the importance of records.  Communicate in writing send all requests in writing and keep a record of everything! Before Nicky was 3 my records had already been used to get Nicky the proper medical care, diagnosis and successfully challenge the school district to obtain the best school placement for him. "Facts not Feelings" - no matter how right we might be, just saying so is not enough. Proof - not just our conviction - in the form of records of events, outside evaluations, logs of daily activities are our ammunition to fight for our kids. These are the tools of the expert parent. It wasn’t always easy but it’s how I got done what needed to be done.  http://autismdaybyday.blogspot.com/2008/01/records-will-save-you.html

3.  Not being familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503)

All sections of the Procedural Safeguards are important to parents. This particular section gives parents some leverage during the IEP meetings. Whenever parents make a request for their child in the IEP meeting, the IEP committee is required under Prior Notice to provide the parents with written notice with a reasonable period of time. The notice must include the following:

• A description of the action proposed or refused.
• An explanation of why the agency proposes or refuses to take the action;
• A description of any other options that the agency considered and the reasons why those options were rejected.;
• A description of each evaluation procedure, test, record, or report the agency used as a basis for the proposed or refused action;
• A description of any other factor that is relevant to the agency’s proposal or refusal.

We have found many instances where a parent requests an assessment or service only to have the IEP team tell the parent it cannot be done. By making all requests in writing and by requiring the IEP team to provide Prior Notice, the parents make the team accountable for its decisions. This practice also takes issues out the emotional areas, allowing all team members to focus on IDEA standards.

4.  Requesting a related service instead of an assessment that supports the need for a related service.

It's like everywhere in life, it's not what we think, but what we can prove. That's really not unfair and it helps other team members know we can be trusted and taken seriously when advocating for our child. Many times parents will request services such as speech, occupational therapy, physical therapy, etc. in the IEP meeting, with our support for the need. When the team does not agree on providing a service, go to the next step, request as assessment that supports the need for the related service. Instead of requesting speech for your child request a speech assessment. 

5.  Accepting assessment results that do not recommend the services you think your child needs.

We've all read assessments that just didn't accurately describe our child and/or the right prescription of services. Under 34 CFR 300.352. Independent Educational Evaluation (IEE), parents of a child with a disability have the right to obtain an independent evaluation at public expense if they disagree with the results of the school’s assessment. When the parent requests the IEE (in writing) the school has one of two choices: they may either provide the IEE in a reasonable period of time or they may take the parents to a due process hearing. When an IEE is agreed upon, parent and school must come to an agreement as to who is qualified to assess the student. The examiner for an IEE cannot be employed by the school district . Parents should request the school district’s policy on guidelines and qualification for their examiners.

6.  Allowing the assessment information to be presented for the first time at the IEP meeting.

Parents are entitled to have the assessment information explained to them before the IEP meeting. we encourage parents to have the person who administered the assessment give them a copy of the report and meet with them to explain the report several days before the IEP meeting. This enables the parents to think through the information before making decisions for their child. If all IEP decisions are based on the information from the assessment, it only makes sense for the parents to be knowledgeable and informed about the assessment results in a way they can understand.

7.   Accepting goals and objectives that are not  measurable.

The longest time spent in an IEP should be on the meat of the matter, measurable goals and objectives. This is where we are saying, here's when my child is today and here's where we want him to be next year, and here's out detailed plan on how we are going to get their and measure our progress. THIS is the big stuff, but this is one more place where all IEP teams are not created equal. In school speak these steps are: The student’s present level of performance (PLOP) and states what  the student is currently able to do. The committee then develops the IEP goals and objectives. The goals state what the student is expected to accomplish by the end of the year in ways that anyone can measure how the outcome. Objectives break the goals down into increments. For example for an IEP held in January 15:

• PLOP

Based on the standardized testing and classroom work, your child is currently able to read on a 7th grade level with 70% mastery.

• Goals

By the end of the school year your child will be able to read on a 7th grade level as measured by standardized testing and classroom work with 90% mastery.

• Objectives

By June 15, your child will be able to read on 7th grade level at 80% accuracy with teacher assistance as measured by our standardized tests and classroom work .

By By December 15, your child will be able to read on 7th grade level at 90% accuracy with teacher assistance as measured by our standardized tests and classroom work .

Now that you've written them, stand back and ask yourself, do I really understand this? Can I see my child achieving this? Do I understand what the goal is? Would anyone reading this, who was not in the IEP, understand it a year from now? 

8. Allowing placement decisions to be made before IEP goals and objectives are written.

A successful placement needs the input of all the team members and it should be based on PLOP, Goal and Objectives. Many times after assessment is discussed, the IEP committee will determine the child’s placement. Goals and objectives are always written before placement is discussed. To ensure that the child is placed in the Least Restrictive Environment (LRE), the IEP committee must determine: Which of these goals and objectives can best be met in the general classroom?

With any remaining goals and objectives that cannot be met in the general class-room,  the committee determines: Which of these goals and objectives can be best met in the general classroom with modifications and support?

This line of inquiry continues until all placement options have been decided upon for all the goals and objectives. The committee must always start with the LRE and then work toward a more restrictive environment only as necessary. IDEA is very clear that the IEP committee must always consider the general education classroom as the first option for students with disabilities.

9. Allowing your child’s IEP meeting to be  rushed, or ending the IEP before you understand.

Rushed IEP meetings is a practice particularly common at the end of the school year when educators are frantically trying to have IEP meetings for all the students who receive special education services. IEP meetings may be held one right after another. If this is the case, or you just ran out of time do not be intimidated, ask to schedule a time to continue the IEP.  It is important that all issues are adequately addressed before closing out an IEP and signing off. Never let feeling rushed,   keep you from requesting that the IEP team meet again at a more convenient time to further discuss your child’s education.

10. Not asking every question you can think of that relates to you child.

It is very important to ask questions and lots of them. The process, that educators just seem to breeze through, is complicated to master. I spend weeks in advance of my first IEP just trying to learn the acronyms specific to special education, so I could at least try and follow what was happening!  All the terms can make the IEP process confusing and frustrating causing the most  brilliant parent to feel pushed out of the conversation before it begins. Here's the truth, we are not expected to know all the terms and acronyms, but we are expected to ask, so ASK!

 

Economic Benefits to Early Intervention...Pay Now Pay Later!

Autism: Early intervention found cost effective through school years

Posted By News On May 1, 2013 - 2:30pm

Nick with his BII in pre-school. Worth every dollar! 

(NEW YORK, N.Y.) May 1, 2013 – The Early Start Denver Model (ESDM), a comprehensive behavioral early intervention program that is appropriate for children with autism spectrum disorder (ASD) as young as 12 months, has been found to reduce the need for ASD therapies and special education services through the school years following their early intervention. These findings were presented by David S. Mandell, Sc.D., Associate Professor, Director, Center for Mental Health Policy & Services Research, University of Pennsylvania Perelman School of Medicine, today at the Autism Speaks Toddler Treatment Network meeting held in San Sebastian, Spain concurrent with the start of the International Meeting for Autism Research.

The investigation evaluated cost of the early intervention, both ESDM and typically available "community" early intervention services, both in combination with traditional autism-specific related services including other forms of ABA, speech therapy, occupational therapy and physical therapy.

After the clinical trial comparing ESDM to community interventions was completed, all children were referred back to the community and parents were free to seek services for their child. During this post-intervention period, children in the ESDM group were found to receive fewer hours of service per month than the children who received early intervention services typically-available in the community (168 vs. 257). This difference is spread across many different services, but is concentrated in the use of special education services and individual therapies, including speech and language therapy, physical therapy and occupational therapy. On the other hand, the ESDM group received many more hours in typical education settings than the group of children who previously received typically available early intervention services.

ESDM is the first early intervention for toddlers with ASD to undergo controlled clinical study of intensive early intervention and has demonstrated both improvement of social skills and brain responses to social stimuli. These optimal outcomes include increased IQ, increased adaptive and social behaviors as well as promoting the normal development of the brain and behavior that optimizes a child's potential to participate meaningfully in the community into their adult years.

"It is very promising to see that children who received two years of ESDM intervention required fewer hours of therapy and special education services through the remainder of their preschool years," said Geraldine Dawson, Ph.D., Autism Speaks chief science officer. "Not only do the young children who receive ESDM benefit in the short term with respect to improved IQ and social skills, and brain functioning, we see that through their remaining preschool years these children require fewer special education supports."

This findings compare 21 children who underwent ESDM to 18 children who received community early intervention during the two years they received these early intervention services and then for four years as they were followed by Principal Investigator Annette Mercer Estes, Ph.D., Research Associate Professor of Speech and Hearing Sciences and Research Affiliate, in the Center on Human Development and Disability at University of Washington. Dr. Estes compiled all of the services the children continued to receive post intervention. Dr. Mandell then converted them to 9 categories of therapy and calculated the cost of each category by multiplying the number of hours of each type of service received by the common cost units based on public reimbursement models in U.S. and U.K.

While ESDM frontloads costs and is more expensive to deliver in those first two years of early intervention, the end of elementary schools by the time children entered high school, ESDM showed a positive return on investment ,by the time children will enter high school" explained Dr. Mandell. "Based on the data we had available, the cost effectiveness of ESDM over a relatively short period of time is clear, even when only examining this narrow group of services. Given what we know about service use as children with autism age, it is quite likely that the long-term cost savings will be even greater," he continued.

During the two years of delivery, ESDM, including all related services, had an average monthly cost of approximately $10,000/child. The average monthly cost of ESDM alone is $5,560/child. Children in the control group, who were receiving standard community-based early intervention, had an average monthly cost of about $5,200/child.

In the four years post early intervention, during which these children were tracked, the ESDM cohort required on average approximately $4,450 in related services – speech therapy, physical therapy, occupational therapy and ABA. The community intervention children, on average, required approximately $5,550 in related services.

Dr. Mandell believes this is provocative research. "We used a very narrow definition of cost for this study, including only autism-specific services, such as physical, occupational and speech therapies as well as ABA," he explained, "I believe the cost efficiencies would become even more pronounced if there had been an evaluation on health costs and overall family economics such as the ability of both parents to continue to work and earn income while their child received services."

ESDM, which combines applied behavioral analysis (ABA) teaching methods with developmental 'relationship-based' approaches, was previously demonstrated to achieve significant gains in cognitive, language and daily living skills compared to children with ASD who received commonly available community interventions. On average, the preschoolers receiving ESDM for two years improved 17.5 points in IQ compared with 7.0 points in the community intervention comparison group.

"This work creates an important framework, such that validated treatments and interventions should be assessed over the long term," concluded Dr. Mandell. "These metrics, the number of functional services and hours of services of support an individual continues to receive, are important measures to demonstrate efficacy."

Financial Support Available for CA Parents Raising Children with Autism

Are you, or do you know someone caring for a child with with autism who requires or constant supervision and support? If so, you need to know about IHSS. In Home Supportive Services is a CA service providing funds to hire a caregiver - or pay yourself is  you're the caregiver and it is separate from your regional center services :). 

This wonderful CA program can help parents caring for a child with autism - who needs support and/or constant supervision - at home. I have met so many families where mom or dad have needed to stay home to care for their child, to go to doctors and therapies, to supervise services, which resulted in some degree of financial hardship. How many mom's have had to cut their hours, quit their outside of the home jobs?  Well if you're one of us, you should check out his program. It should not change any of your regional center supports, it's not respite and you have flexibility around how you spend it. Ask your Regional Center caseworker about the program and if he/she can make a referral. 

IHSS is a program in CA. Here's a little more information. Good Luck! And please share this will families, you never know who might be in need. 

IHSS – In Home Support Services

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What is IHSS?

The IHSS program is a statewide mandated program administered by each county under the direction of the California Department of Social Services. It provides those with limited income who are disabled, blind or over the age of 65 with in–home care services to help them remain safely in their own homes.

The three different IHSS programs explained…

There are three different IHSS programs: The Medi–Cal Personal Care Services Program (PCSP), The IHSS Independence Plus Waiver Program (IPWP) and The Original or Residual IHSS Program (IHSS–R). The PCSP and IPWP programs are funded with Federal, State and County dollars, while the IHSS–R program is funded with State and County dollars only. Each of these programs provides the same services, but have different eligibility criteria.

• PCSP – Recipients are eligible because they have qualified for Medi–Cal on basis of age, blindness or disability. Most IHSS recipients are part of the PCSP program.
• IPWP – Recipients are eligible because they have qualified for Medi–Cal and are also part of one of the following groups: parent provider for a minor child, spouse providers, advance pay cases and meal allowance cases.
• IHSS–R – Recipients do not meet PCSP or IPWP requirements and usually have Satisfactory Immigration Status, which denies them federal reimbursement.

What services does IHSS provide?

Services include, but are not limited to:

• Domestic Services: meal preparation, cleaning, laundry and taking out the garbage.
• Personal Care Services/Non–Medical Care: bathing, feeding and toileting.
• Transportation and accompaniment to medical appointments.
• Protective Supervision: safeguard from injury for persons with mental impairments.
• Paramedical Tasks: assistance with medications, bowel and bladder care or catheter insertion.

Who is eligible for IHSS?

Any California resident is eligible for IHSS if they:

1. Are SSI/SSP or Medi–Cal eligible.
2. Are living in their own homes.
3. Are blind, disabled or 65 years of age or older.
4. Are unable to live safely at home without care.
5. Meet certain financial requirements.

Note: Residents of long term facilities may not receive IHSS in the facility, but may apply if they are expected to be discharged so that IHSS is in place when they return to their homes.

What are the resource limits for IHSS?

• Recipients of SSI/SSP automatically meet financial requirements.
• Recipients who meet SSI/SSP eligibility criteria except for income are eligible, but might have to pay a share of cost.
• Applicants who have more than $2,000 in nonexempt assets ($3,000 for a couple) are not eligible. Applicants can spend down assets in order to qualify; however, they should be aware of penalties/periods of ineligibility.

Note: Although resource requirements for IHSS Personal Care and Waiver programs are the same as Medi–Cal, many IHSS recipients are also on SSI/SSP. Transfers that are permissible under the Medi–Cal and IHSS programs could impact SSI/SSP eligibility.

Who provides IHSS services?

Each county can choose different modes of services delivery: Contract, County Homemaker,or Independent Provider (IP). However, it is up to the individual to decide what mode of service delivery they wish to receive. In the Contract mode, an outside agency dispatches a caregiver to your home. In the County Homemaker mode, the County trains and employs caregivers. Most IHSS clients use the IP mode of service, where the client hires, fires and supervises workers.

In most counties, Public Authorities have been established to improve IP service delivery. IHSS pays IP’s who are hired and supervised by the recipient or the recipient’s guardian/authorized representative. Many IP’s are relatives of the client. Payments are issued by the State Controller’s Office, directly to the IP. The current IP wage throughout most of California is $8.00 (CA minimum wage). In the Bay Area Counties, Public Authorities have been able to negotiate higher wages and comprehensive health and dental benefits.

How does IHSS calculate how many hours I get?

The State has limited monthly services hours to 195 hours per month for non–severely impaired applicants and 283 hours per month for the severely impaired. The County Social Services Agency is responsible for doing a needs assessment for each client at the time of application and yearly thereafter to determine how many hours an applicant will receive monthly. The process of the needs assessment will be repeated yearly, and the number of hours authorized may change with each evaluation.

The assessment evaluates:

1. The client’s physical/mental condition, living/social situation and ability to perform various functions of daily life.
2. The client’s statement of need.
3. Medical records/physicians’ statement of need.
4. Other information the case manger may consider necessary and appropriate to assess the need.

How do I apply for IHSS?

Call or visit your local Department of Social Services to complete an IHSS application (see link below). Once IHSS receives your application, a caseworker will be assigned to conduct a needs assessment. During the needs assessment, the caseworker will come into your home and ask you questions about your physical and mental capacity in order to determine what you can and cannot do. As part of the application process, you will need to have your health care provider fill out a medical certification form (SOC 873) stating that you are not able to do some activities of daily living (ADLs) on your own and without IHSS you would be at risk for out of home placement. Your living situation will also be evaluated. After the needs assessment, the IHSS caseworker will contact you and let you know if you have been approved or denied the service. If approved, the caseworker will tell you how many hours were authorized.

Appeals

If you are denied Medi-Cal or IHSS or if you do not agree with the number of hours authorized, you may appeal the decision by filing for a fair hearing. You should contact your local legal services office to assist you in the appeal.

Click here for a listing of California In–Home Supportive Services Programs and telephone numbers.

Warning - Hidden Messages in Teen Clothing!!!!!

Boy was I humiliated!!!  I'm the mom who says "If  you don't know where a word or phase came from, don't use it!"  Just because people are saying it all the time, and the kids say it, doesn't mean you want to say it.  I do the homework".  That's how I learned that the whole low pants trend on men started in prison  (it's a myth that it has anything to do with sex, and gay men...but enough of society thinks it's true, it might as well be) and it's not a look I'm encouraging for my black male child!  Then there's the popular phrases "It sucks" and "That's tight" if you guess they originated as sexual terms...you're right!

So why would a mom paying so much attention get a call from school saying "Do you know what Nick's shirt means? Do you know what a Cleveland Steamer is?" A girl came up to Nick's aid and said "You're kidding right", that's a joke?" All I could say was what do you mean? He's wearing his red Cleveland Steamers shirt, it's a baseball shirt.  I was part right. But the WRONG part was massive!!!! The back of the shirt said "Tenacious D, 6666". it looked like team players name and number.NOT!! I know some of you are already gasping and laughing hysterically because you were in on the joke, you know Jack Black, but it's no doubt a 20 something reference far of the radar any one over 40 something and special needs kiddo's, and a slew of other not so hip folks.  It's so funky and gross I'm not going to spell it out, if you want to know ask a 20/30 something or look it up...and warning, be prepared for a major OMG moment!

That said, I'm sure they made more than one of these, so heads up! 

IEP Parent Rights - Answers to 12 Most Frequently Asked IEP Questions

1. Parents do not have to sign an IEP at the end of an IEP meeting if they disagree with the IEP. 
2. Parents can sign an IEP with exception, for example “I am signing this IEP but I disagree with the teams decision to reduce my child’s hours for speech and I am at this time filing a request for due process”.
3. Parents who need a language interpreter to thoroughly understand everything being said/read in the IEP, can request an interpreter (which you need to do in advance of the IEP and I recommend you do so in writing). Parents will then be provided with an interpreter for the IEP at no cost to you.
4. Parents have the right to request that their child be assessed for Special Education without delay. 
5. Parents have the right to list all of their concerns in the IEP. 
6. Parents have the right to file complaints, including state complaints and due process complaints, and disagree with parts or all of the IEP.
7. Parents have the right to ask for an Independent Educational Evaluation at public expense when they disagree with the school district’s assessments. 
8. Parents have a right to request a new IEP meeting be held within 30 days of a written request when an IEP is already in place. 
9. Parents have the right to participate in the IEP meeting and have their opinions heard and noted. 
10. Parents have the right to bring any person to an IEP meeting with knowledge of the child or the child’s disability including social workers, case workers, family members, advocates and attorneys. 
11. Parents have the right to review and receive copies of their child’s educational records. 
12. Parents have the right to consent, refuse to consent or revoke consent for special education for their child. 

Why are Parents Afraid of the "IEP"

I was going over papers, talking to the school nurse and Nick's teacher in preparation for my son's Tri-annual IEP last week, when I was asked "You seem anxious, what's an IEP?"  I'm so used to being anxious I didn't notice, but she was right. Before I knew it I was telling her this story.  

IEP stands for Individual Education Plan and it strikes fear in the hearts of many parents. The terms Tri-annual IEP and Transition IEP can be even more anxiety provoking because experts - which can include people you and your child have never met - evaluate your child  to provide critical information that is used to determine services. IEP's are created in meetings where a students educational team and parents come together to review a students individualized educational needs to determine what has worked, what's not working and what would be best moving forward. It sounds good and sometimes it does goes well. Sometimes the entire team agrees on a plan of class's, transportation, supports and services to move a student forward.

"Why are parents anxious about IEP's; in short how would you feel knowing that the success of a critical part of your life or your child's was going to be decided by a committee, which may include strangers, on an annual basis? Hummm, I'm just sayin :)."

Parents are afraid of IEP meeting because they offer up a frightening annual opportunity to learn how many different opinions a group of adults can  have about what best serves a child.  All the education support services a student will keep, gain and loose in the next school year are at the mercy of the the IEP participants, who may or may not know anything about your child. From diagnosis (which determines eligibility for services), school placement, educational goals, classroom placement, behavior plants, behavior support, speech, OT, APT, behavior plans, transportation, are all of the table for renegotiation once a year! Not hard to see why parents feel a little anxiety around the process!

IEP's always have an element of the unknown, as different agendas, levels of knowledge, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. Visions of David and Golliath have been known to come to mind for many a parent. For example; two weeks before one of Nicky's IEPs, an aid told me "People have visited his class from the district and one told me they were trying to see if Nicky no longer needed a behaviorist because he had good grades". Yikes, there went any calm I was holding on to!!! Really, good grades??. If this statement was accurate or not - which I will never know - it is an example of what happens in schools and our communities when people, even teachers and principles, have deep misconceptions about autism. There is still a great deal of confusion about behavior and intelligence in people diagnosed with ASD. For example some people think a person with autism who has normal intelligence can rely on their intellect to turn off and on any inappropriate behaviors they have associated with their diagnosis, or that autism does not mean unable to learn. Or in this case,  when behaviors improve due to intervention, and the success of behavior intervention is not necessarily proof that the support is no longer needed, rather it's probably proof that is is needed and working!

News Alert: California & Self Determination...Who Should Choose? RC's or You?

Self Determination is back in the spotlight and the community is divided.

If you don't know what self determination is, now is a good time to find out. In brief self determination let's families and individuals with developmental disabilities take greater control and determine for themselves what services are right for them.  The pro's want control of "how" the budget for their children's interventions is spent. They see benefit in control over what therapies they can select and the ability to choose the provider of their choice without being limited to Regional Center pre approved interventions and providers.

The con's mostly agree this is a good program for very proactive families who have the time and resources to research agencies, and monitor interventions and programs. The con's worry that the lack of controls will leave many families to fall victim to poorly managed programs, loosened guidelines and high risk and or snake oil type interventions without consistent Regional Center oversight to keep folks in check.

Here's the latest information from ASLA's website detailing Self Determination and upcoming legislation. 


The Autism Society of Los Angeles along with Disabilities Rights California are sponsoring 
California Senate Bill No. 468: Self-Determination Program for Individuals with Developmental DisabilitiesClick here to view the content of Senate Bill No. 468. Use this link to determine your State Senate and Assembly representatives.
Introduced and supported by Senators Emmerson and Beall, this bill would allow individuals with developmental disabilities (with the support of family, friends, and professionals) to take charge of their future by gaining control over the services, supports and resources they need to reach their life goals. Learn more.What is self-determination?

Self-determination provides an alternative to the traditional method of providing regional center services to consumers. Self-determination helps individuals with developmental disabilities gain a life that:

• Respects their own choices and fulfills their hopes and dreams.
• Fosters independence while encouraging interdependence.
• Allows them to choose services and supports that are not bound by what is currently available.
• Reaches farther than meeting basic needs and toward creating a meaningful life.
• Has services and supports based on their changing needs.
• Is not unique to individuals with disabilities.

Has California ever had a self-determination program?
Yes. In 1998, the California Legislature (SB 1038) amended the Lanterman Act to include a Self-Determination Pilot Project. The highly successful program was piloted in five regional centers across California and included 200 participants. The program continues to exist for the original pilot participants as long as they choose self-determination. This legislation will offer the self-determination program to consumers throughout the state.Do other states have self-determination programs?
Yes. Self-determination has been enacted in some form in almost every other state. It has garnered international and bi-partisan support as a delivery model that provides consumers and families with greater control over their services and their future. Self-determination as a service delivery model is also being used with other service systems (elder care and veterans, for example) in many states.Will consumers be required to be part of self-determination?
No. Self-determination will be a voluntary option, and individuals with developmental disabilities may choose to be part of the program. No one will be forced in or out of the self-determination program.Can we have a statewide self-determination program without changes in current law through the Individual Program Plan (IPP) process?
No. The current IPP process limits consumer choice based on program restrictions imposed by the Legislature in the budget and regional center contracting procedures. Self-determination moves the decision-making responsibility to the individual and his or her team. The relationship between the individual and the suppliers of services and supports (vendors) changes in that the vendor is now working for and accountable to the individual and not the regional center. Self-determination should lessen differences between regional centers and move from a system that is similar to managed care to one that is driven by consumer need and choice.What is a “Person-Centered Plan?”
The individual with the developmental disability must be at the center of the plan and of the plan development. This planning process can be led by an independent facilitator who is experienced in the broad range of services and opportunities in the community to assist the consumer in reaching their life goals. This process will lead to short and long-term goals, including laying out the types of services and supports that an individual will need to work toward their goals in the next year. What is an Independent Facilitator?
An Independent Facilitator is not associated with any regional center or service provider and would work directly for the consumer and family with no conflicts of interest. Independent Facilitators will be trained by the Local Advisory Committees. A consumer and family can choose to use an Independent Facilitator to assist them in the following ways: 

• Designing their person-centered plan.
• Participate in the budget negotiation process with the regional center.
• Assist them in selecting appropriate individuals, programs, and services in the community that will help them reach their life goals.

What is a Fiscal Intermediary?
The fiscal intermediary is like an accounting and/or bookkeeping service. The fiscal intermediary actually receives the funds to be used to support the implementation of the individual’s plan, disburses the funds in accordance with the plan and rules, and maintains financial records as required. The fiscal intermediary needs to be accessible to the individual being served and the Independent Facilitator, if one is used. The fiscal intermediary will know the program requirements and be approved as a vendor by the state.Will self-determination cost the State more money? 
The legislation specifically states that the program must be cost-neutral in the aggregate. The budget for the regional centers will be the same, but for some consumers, there will just be a different way of distributing it. Self-determination will redirect existing resources and allow individuals to have more control of the way state dollars are being spent on them. In addition, self-determination programs around the country have shown a cost savings over time because the services are more directly meeting the needs of consumers and they have better outcomes and need fewer supports in the future.What will be the role of the regional centers with consumers in the self-determination program? 
Self-determination should be considered as an alternative within the regional centers to the traditional or case managed system of care that is now used throughout California. Regional center staff will still hold Individual Program Plan (IPP) meetings and will work together with consumers and families to determine a reasonable budget for the individual to work toward their life goals for the following year. This negotiation process should be cooperative and collaborative. Regional centers, however, will not be able to select specific services or providers for consumers in the self-determination program.What if emergencies happen and a consumer’s budget is not sufficient?
Self-determination recognizes that consumers’ needs may change. If they do, consumers can request an IPP with their regional center to adjust their budget to address the emergency or significant changes. The person centered plan will be appropriately amended or redeveloped and a new or revised budget established.How can we ensure that low-income and traditional minority consumers take advantage of this option? 
The bill requires that self-determination be available to consumers and their families who reflect the diversity of consumers served by the regional centers. Because self-determination allows for flexibility, the model will likely be of interest to individuals who because of their culture or disability prefer different services. SB 468 calls for special outreach to underserved communities to make sure that consumers and families are aware of the self-determination option and to provide them orientation and training that is culturally competent.How will the program prevent fraud and abuse?
In the pilot, there was very little evidence of fraud or abuse. In addition, all services provided through self-determination will have to be HCBS waiver eligible and meet certain federal requirements. Independent facilitators will be trained on the types of programs and services that qualify. All payments will be made by a fiscal intermediary who will also understand the program requirements and whose work is subject to audit. What kind of oversight will be provided?
Person centered plans may be audited either individually or collectively. Budgets will be reviewed and are subject to audits. The work of the fiscal intermediary is also subject to audit. The regional centers and DDS have oversight over the program. Since Medicaid funds will help fund the services and supports, federal requirements also must be met.Are people who choose Self-Determination going to get more services from the regional center than people who stay in the traditional system?
Self-determination is not about getting more or less services – it is about getting the right services. It is about how services are accessed and controlled. What is the role of the Local Advisory Committees?
The bill establishes local advisory committees to provide oversight of the entire program, including the role of the regional centers, the budget negotiation process, and consumer outcomes. The committee will also train Independent Facilitators. Members of the Local Advisory Committees will be appointed by the Area Boards, the Office of Clients’ Rights, and the regional center. The majority of the committee should consist of consumers and family members and reflect the make up of the surrounding community.How is this different from a voucher program?
Consumers and families will not be receiving any vouchers. All programs and services will bill the fiscal intermediary who will pay them directly. What is the difference between this Self-Determination Program and Self-Directed Services or the Individual Choice Budget?
This legislation expands statewide the Self-Determination Pilot Project with its philosophy of consumer choice and control. The Self-Directed Services and Individual Choice Budget programs have different structures and have never been implemented.Click here to view the content of Senate Bill No. 468.

To determine your State Senate and Assembly representatives, visit this link: http://findyourrep.legislature.ca.gov/

Happy Birthday to Me :)

Happy Birthday to me and to all the other April babies out there! Gave myself the best present ever :). After I put Nicky on the school bus instead of my usual am routine of work, cleaning, etc. I....drum roll.....WENT BACK TO BED, and feeling guilt free I fell promptly asleep.  Oh yes, this is a great day. 

P.S: It's Nicky's birthday this weekend and he'll be having is very first "Surprise" Birthday Party. It's gonna be great.