Case Study in Self Direction: Paying for non-traditional services
By Jim Karpe March 2016
My goal was to find and pay for the right program for my son who has Self Direction. NorthWood Center (NWC) was a great fit for my son, an immersive 7-week program that prepares young men and women with IDD for the transition to adult life http:/nwood.com/programming .
Similar programs are in place at other summer camp providers, such as the Ramapo Staff Assistant Experience www.ramapoforchildren.org/our-work/staff-assistant-experience.
Funding
OPWDD has determined that for my son Eli, $10K of the annual cost can be paid for. Generalizing from this, Self-Direction participants who want to attend programs such as NorthWood Center (NWC-like) should be able to put together the same funding, which is a combination of “Summer Camp” money and state-only funds from IDGS and Family Respite. My son’s budget uses the maximum from each of these three pools.
- $4K for Summer Camp pulled from Individually Directed Goods and Services (IDGS), which is Medicaid Funds
- $3K from Other Than Personal Services (OTPS), which is State-only funds
- $3K from Family Reimbursed Respite (FRR), which is State-only funds
Preconditions:
- You need to have an ISP that includes valued outcomes that are supported by a NWC-like program. In my son’s case, his goals include ADL, independence, and workplace readiness. All of these are supported by NWC.
- You need an approved Self-Direction program (SD), including an approved Self-Direction budget that allocates funds as shown above. This must be in place before the start of services, in this case the start of the Summer Program.
Families who already have an approved SD budget should work with their Support Broker to file an amendment re-assigning funds as described above.
If new to Self Direction, move cautiously
For families who are brand new to Self-Direction, you might want to first get an approved budget which does not include this creative re-adjustment of funds. Many OPWDD staff are not yet familiar with this option so it is likely to hit a couple of speed bumps along the way, and you want to get to an approved budget as soon as possible. The approved budget will allow services to start, including hiring Self-Directed staff, paying for community classes, etc. In that initial budget, you can and should ask for the maximum of $4K of Summer Camp funding.
Then, as soon as you have an approved budget, file an amended budget as described above. You can file amendments as often as you like.
Problems with this approach
One practical problem with the OTPS & Family Respite approach is that those budget lines are capped. In my family, we have siphoned off all that money to NWC, with nothing left to pay for Direct Service Professional (DSP) activities, transportation, or ads to hire DSPs. For many Self Direction participants, this is makes it impossible. Our next step, was to have a Medicaid Fair Hearing to challenge this premise. We are asking that the “segregated” NWC program be paid for using Medicaid funds. Watch for an update when there is a decision.
Lessons Learned
The “state only” funds available to people in Self-Direction do allow for more flexibility. This money is meant to fund only those things that cannot be funded with Medicaid Funds. The caveat is the State-only funding pool is very small, and the use of Medicaid Funds is too restricted. How restricted? My son finished his budget year with $25K in unused Medicaid Funds, money he was not allowed to spend– and almost $7K in unpaid bills for services that helped him meet the goals in his Individualized Service Plan. It is fairly common to encounter so many obstacles that you are unable to spend 70% or more of your budget.
You can demand the restoration of services that have been diminished, dropped, halted or refused. You can challenge any refusals that you receive, whether you are in Self-Direction or not. If restoration is not granted, you can use the mechanism of a Medicaid Fair Hearing to put your demand in front of an Administrative Hearing Officer. I am not a lawyer, so this is not legal advice, but my interpretation is that everyone has the right to appeal any service refusal. If your adult child in a group home is no longer getting weekend outings, that is a refusal of service. Go on-line and ask for a Medicaid Fair Hearing. To file for a hearing, start here: http://otda.ny.gov/hearings/request/
One common example of ‘refusal of services’: Many of us in Self-Direction have been told that a particular program cannot be paid for by Medicaid Funds because it does not meet the definition of “Community Class”. Specifically, it often happens that the Medicaid Funds from the Individually Directed Goods and Services (IDGS) are refused because the program is not open to the general public. We now have a mechanism to directly challenge those refusals, due to the Fair Hearing decision in Hearing #7220725N.
See http://otda.ny.gov/fair%20hearing%20images/2016-3/Redacted_7220725N.pdf. You can ask that the refusal be reversed, citing that hearing. If your request is not promptly granted, then request your own Medicaid Fair Hearing.
Community Classes and People with IDD
With regard to Community Classes, we enter a bizarro universe—why would the general public actually be interested in coming to a class, at a place like Northwood where the pace and content are geared toward the needs of an individual with severe IDD? It should not matter if the answer is no. According to the rules as written, the only thing that should matter is whether the general public is invited. (According to me, these criteria are laughable, and what should matter is whether the program meets the needs of the individual.) In any case, whether or not the general public chooses to attend is their business, and it is not the fault of my child or yours. To meet the criteria as layed out by OPWDD, the class only needs to have published fees and be available to anyone whether or not they have OPWDD eligibility. Note that these criteria are a moving target, and there has recently been an attempt by OPWDD to add the criteria that the class must be attended by 60% individuals without IDD.
On the other side of this bizarro coin, could the needs of an individual with IDD be met in a class that is not customized and adjusted to those needs? In a few cases, yes. My “high functioning” Aspie daughter successfully attends mainstream dance classes at Mark Morris Dance Studio. But my son with a low IQ would be lost and would probably have drowned in a mainstream swim class. At the class specifically tailored to his needs– but open to the general public– he has been successful in learning enough to ensure his basic water safety.
Parting Words
One size does not fit all. What works for my daughter does not work for my son. What works for my son will likely not work for your child. We need to get OPWDD and CMS to honor their commitment to Person Centered Planning. Currently those organizations are completely focused on regulation and oversight. We need to shift the emphasis to serving the needs of the individual.
Yes, we need regulation that prevents fraud. Right now we have regulation that prevents services!