Yesterday I had the less than joyous experience of attending a parent briefing meeting about Idaho’s redesign of the Children’s Developmental Disabilities Services Program. This redesign is the biggest pile of bureaucratic bullshit I have ever seen. It is going to hurt taxpayers, families, and most importantly, the children who rely on developmental disabilities services to reach their greatest potential of functionality.
The new program focuses around a “Family-centered” approach to services, which is great in theory. But when you dissect the details of the program, the flaws and problems are innumerable.
First, it’s important to give a brief background on why the Developmental Disabilities Services Programs were instigated in the first place. The government created these programs as a means to help enable parents to keep disabled children in the home, rather than having them institutionalized, significantly reducing the taxpayer burden, and helping individuals with developmental disabilities reach their highest level of functionality, for the benefit of both the individual and society as a whole.
The instigators of the redesign claim that families in Idaho have reported a deep dissatisfaction with the traditional program, but I do not believe this is the true motive behind the redesign (I will discuss that point in more detail later) In the traditional program, qualifying children receive services paid for by Medicaid through a licensed Developmental Dis abilities Agency (DDA). Children can receive up to 22 hours per week of various types of services, including but not limited to developmental therapy and intensive behavioral intervention (IBI).
Developmental therapy is one-on-one therapy of the child with a trained, background screened, paraprofessional through a DDA. Therapy is performed in both a developmental center and community settings. Therapy is very focused and goal oriented. Each child has a detailed plan developed by a professional Children’s Developmental Specialist (DS), of whom has a minimum of a Bachelor’s degree in a human services field including core competencies in childhood development, as well as having passed a very comprehensive skills test to be certified as a DS. This plan includes very structured goals and desired outcomes for the child in various areas of development and includes detailed descriptions of “programs” oriented towards helping the child reach the goals. The developmental therapy technician is responsible for charting and reporting all programs completed during each therapy session and is under the direct supervision of the DS and the DDA with which they are employed.
Intensive Behavior Intervention (IBI) is a more specialized facet of therapy used for children with developmental disabilities that demonstrate maladaptive behaviors that require a more skilled level of intervention. IBI is performed one-on-one with the child by a certified IBI professional. An IBI professional also holds a minimum of a Bachelor’s degree in a human services field, as well as having completed a comprehensive training of safe intervention and specialized therapy techniques. All of the services a child receives are organized and coordinated with a service coordinator/case manager, also employed through the DDA.
Under the redesign program, qualifying children will be assigned an individual Medicaid budget tiered to the particular qualifications/assessed needs of the child. It will then be the sole responsibility of the parent/legal guardian to determine how these funds are allocated to services. The family will take on the role of “employer” and may hire whomever they choose to be the “employee” for their child. The only qualifications required of an employee is that the person be 18 years of age. No background check, no outside training, no experience, no affiliation with a licensed entity, absolutely nothing. So, any Jo Shmo can be reimbursed by Medicaid out of one’s budget, paid for with tax payer dollars, for services performed for the disabled child. The proponents of the redesign tout that this is more desirable because it gives families the flexibility to choose someone they know and trust to care for their child. But the problem comes with the fact that there will be absolutely no oversight of the services being performed. There will be no structured therapy plans, no programs, no data collection or submission of detailed therapy reports. There will be no licensed agencies overseeing the quality of the employee and the therapy being performed. The only thing the parent is responsible for reporting is the time card of their employee to Medicaid in which the Fiscal Representative will cut the employee a check. This gives too much credit to the ideal that all families will act in the best interest of their child simply because that is the correct and moral thing to do, and leaves the door wide open for fraud. How easy would it be for a family with a qualifying child to “hire” their brother, boyfriend, cousin, or whoever, to provide “services” for their child, bill Medicaid, and pocket the money to feed their meth addiction? Too easy and I guarantee that this will happen. There are zero safeguards in place.
Another problem with the redesign is how the personal budgets will get used. The representatives claim that the allocation of money is similar to the traditional system and that the only difference is giving the families more control over the money, but when the numbers were broken down, that did not appear to be the case. First off, there is a mandatory fee of $108 per month per child, out of the family budget, to pay for the outside Fiscal Representative. Additionally, a family is required to either hire a professional Services Broker (the position I applied for), or complete the intensive training to be their own unpaid Services Broker. The service broker is the closest thing to a service coordinator in the new program. They are responsible for helping the family write a plan that demonstrates which services they have chosen to allocate their yearly budget towards, as well as payment agreements between the family and each employee. However, unlike a service coordinator, the service broker does not have any role in quality assurance of the services that are being performed. They are simply the budget writer. The family must pay for the Service Broker’s service out of their individual family budget. Once the family has hired the employees that will provide services to their child, they will be responsible for the employer share of all tax liabilities for their employees, out of their individual budget. If they desire to provide workman’s comp insurance for their employees, they may do so, out of their individual budget. If a family desires to protect themselves legally from the unfortunate situation of being sued if their child injures an employee during services, they can purchase liability insurance, out of their individual budget. If the family desires to have their employees undergo background and drug testing, they can pay to do so, out of their annual budget.
It quickly became apparent that after all of the overhead costs to the family, the annual budget would have next to nothing left to actually pay for the services that are intended to help the child…
The second issue with the redesign is the method by which the allocation of funds is distributed. There are tiers of qualification. The first tier is for a child who meets criteria for developmental disability. This tier is allocated an annual budget of $6200. The highest tier is designated for children between the age of 3 and 6 who have a diagnosis of Autism or exhibit extreme maladaptive behaviors. This tier is allocated an annual budget of $29,000. So, if you are a child like Jameson, who is significantly developmentally delayed, exhibits many of the same symptoms, including receptive and verbal communication deficits, as a child with Autism, but is not Autistic, you get $6200 a year. But if your child is diagnosed Autistic, regardless of the degree of functional disability, you get $29,000 a year. This prompted my first question in the meeting.
I said: “So, what you’re saying is that if I have a 3 year old child that is significantly developmentally delayed due to congenital hydrocephalus, seizures and multiple brain surgeries, he will only get $6200 a year? How is it fair that a child with a diagnostic label of “Autism” automatically gets more than four times the budget as my child and all the other children with any of a plethora of causes of developmental disabilities, just because of a diagnostic label? Why is the determination of budget not a sliding scale based on results of a comprehensive battery than can quantify the level of disability in a measurable, un-biased way, devoid of ambiguous diagnostic labels?”
The representative of the program responded, “We are taking an evidence-based practice approach to this new program. The research evidence shows that intensive intervention of children between the ages of 3 and 6 is crucial for ensuring the best possible outcomes for that child long term.”
I interjected with a very frustrated, overly loud tone of voice, “But only for children with Autism, right? Not for all the others? My understanding is that the research shows that intensive early intervention is critical for children will ALL forms of developmental disability…how is it fair and reasonable to select ONE particular diagnosis for allocation of the majority of the Medicaid dollars?”
She furrowed her brow, nodded her head, and said, “I understand your frustration…” and then proceeded to call on the next person without addressing my questions. I was incredibly satisfied when several people in the audience yelled “You didn’t answer her question!”
Meanwhile, one audience member was spending time calculating the numbers on his phone, using the provided recommended payscale graph for each type of employee, the Fiscal Representative fee, the additional costs, and the budget his child would receive, and after it was all said and done he determined that his child would have enough money in his budget for 5 hours per week of respite care with a non-professional. Going from 22 hours of intensive behavioral therapy with an IBI professional to 5 hours of glorified babysitting with an individual exhibiting zero qualifications is quite the blow. This revelation made many parents furiously upset. One lady asked, “How can you say this is better? How? You fail, Idaho. You have failed me, and you are failing my son.” The representative responded, “It’s important to remember that quantity is not always better than quality, and that if the therapy is done correctly, 5 hours per week can be just as effective as 22…” Obviously the same man who did the calculation yelled, “Quality?? What kind of quality am I going to receive paying someone $9 an hour to hang out with my kid with no training, no experience, no expertise?? And I thought this was an evidence-based program…the evidence states that children with severe developmental disability receive the maximum amount of benefit receiving consistent therapy 15-30 hours per week!” The woman was blown and in her fashion, ignored him and called on someone else.
I held my hand up the whole time because I had so many questions, but the lady refused to call on me. A little old lady with a British accent walked back to me and said, “Here honey, I will help you hold your hand up, because you’ve got to be tired sitting back here getting ignored because you ask relevant questions.” Brought a serious smile to my face. I finally gave up on the hopes of being called on and instead just interjected whenever I could. I asked, “How are you going to ensure quality of therapy when there will be no plans, no data collection, no follow-up? Where is the oversight? Who is going to protect the money from being used fraudulently?” Again, no answers. They kept saying, “We created this because this is what the families want,” although there was a room full of 100 or so parents screaming that this is not what they want.
I do not trust their motives and here is why: an audience member brought to the attention of the speaker that under the traditional program, children in the 3-6 years old with Autism category used an average of $10,000 a year, whereas under the new program they will be given $29,000. He asked why the number was so much lower under the traditional program and the program representative responded, “Because in this category, there is a very low percentage of qualifying children that actually participate in the program and use services.” BINGO. How smart is it to look at the data and say, “Hmm…we see here that this particular demographic of children has a very low participation rate….let’s give them a grossly out of proportion chunk of the new total budget, because they aren’t likely to use it, anyways…” This equates to more money left in Health and Welfare’s pocket, protecting the interests of themselves and the job security of their employees, all at the expense of children. It literally makes me want to vomit watching people use disabled kids as the pawns for their own selfish agendas.
I feel a deep and profound moral objection to participating in this new program. Just because I have a disabled child does not mean that I should be entitled to a free chunk of cash from tax-payer funded Medicaid when there is absolutely no structure or safeguards in place to ensure that the money is going to be used for its intended purposes. But what can I do about it? I feel completely helpless. I can blog and rant and rave. I can go to all the meetings and practically have to scream for my concerns to be heard. But really, there is nothing I can do. Bureaucratic BULLSHIT at its finest, ladies and gentlemen. Right here, in this grand ol’ state of Idaho…
