June 1, 2011
I am a parent of a child enrolled in early intervention services at the Durham CDSA. My child has been in the program for one year now and receives CBRS (developmental therapy), physical therapy, and speech therapy. Speech is her biggest issue and she has speech therapy twice per week.
Today I had my yearly IFSP review and was asked to bring my tax forms for the financial review as well. I was aware that the financial system was changing because I received a letter asking me to bring my tax documents, but my impression had been just that you would now require verification of income instead of using self-stated income. However, the change is much greater than that. Previously, the income calculation for the sliding scale was my gross income minus taxes, daycare expenses, and medical expenses. Now I am told that it is simply based on gross income without any deductions. Your website says that “It is likely that the majority of families will see little or no increase in the cost for their child's early intervention services,” however that is not true at all in my case. Not deducting my taxes, daycare, and medical expenses makes a difference of $45,000 for me, and since you have not adjusted the sliding scale categories to take this difference into account on the income scale, I have suddenly gone from the 40% bracket to the 100% bracket. When you say that the majority of families will see little to no increase in the cost of services, you must only be referring to those at the very top and very bottom of the bracket already. This cannot be true for middle class families, particularly those who have daycare expenses!
In addition, I also found out today that CBRS services will no longer be covered and I will have to pay for those as of July 1, which means that I will have to pay 100% for four therapies per week instead of 40% for three therapies per week. My current weekly expense is $24 and it will go up to $80 as long as my insurance is used. However, I only get 75 therapy visits per year combined under my insurance plan, so after my visits run out, I would be paying almost $400 per week for therapies. If CBRS visits will now count toward my insurance visits, then that just means I will run out of those visits that much sooner.
I have been trying to budget in advance for my daughter’s therapies, knowing that I will eventually run out of insurance visits and planning for that. However, adding CBRS to the mix, decreasing the time to when my insurance visits will run out, and increasing my cost share from 40% to 100% has really given me a shock. This is a huge change in my financial situation to spring on me without notice. As a result, we are now planning to cut CBRS and PT from my daughter’s plan and focus just on speech. This will decrease our monthly costs, and increase the amount of time we have until we run out of insurance visits. However, my daughter will be losing services.
I can’t imagine that we will be the only ones to cut services that we would otherwise like to have for our child due to of this new financial policy. I’m sure that many families will be put in a similar position and need to cut services. Our CBRS therapist was dismayed and said she expects her remaining clients to become mostly only the Medicaid clients, so I am not the only person who expects this. I understand that there is a 5% monthly cap, which we will certainly make use of, but 5% of gross income is a lot and I doubt that most people have that kind of flexibility in their budgets. If the point of the state Infant Toddler Program is to get more kids under age 3 into the early intervention services that would help them, then this new policy does the opposite because now kids like mine will be getting fewer services.
This new policy was not effectively communicated to me or even to my service providers in advance of my IFSP meeting. My CDSA service coordinator did not even realize that my taxes/daycare/medical would no longer be deducted from my income for my sliding scale calculation. She can’t communicate this information to me if she isn’t informed of it herself. When I am trying to plan and budget my life, I need more notice than this for such a major change. I feel that a notice describing the changes in the financial policy should have been sent out to families as soon as the changes were made. In addition, families who are currently receiving CBRS need to be informed that in one month they will have to start paying for this service. Today was the first I heard of it, and it’s only because my yearly review was due. I looked at the documentation on your website and did not find anything explicitly describing that the method of calculating income is significantly different, nor that CBRS would no longer be included. The new policy is there, but there is nothing contrasting it with the old and detailing the differences. These changes need to be made clear to the service coordinators and the families using these services.
I don’t understand why this drastic change was made to the sliding scale calculation, nor why you would think that this would have little to no effect on families. I don’t understand why I wasn’t given more notice and information about this change so that I could plan and budget for the future. I don’t understand why my providers and service coordinator are not even well enough informed about the changes in order to accurately convey the information to me in a timely manner. I am disappointed that CBRS will no longer be covered, and that today was the first time I was told. I am disappointed that I will be paying significantly more money than I had budgeted for significantly fewer services. And I am disappointed that my daughter will be receiving fewer services because of these changes.