Category Archives: Self-Direction

Case Study in Self Direction: Paying for non-traditional services

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:/ .

Similar programs are in place at other summer camp providers, such as the Ramapo Staff Assistant Experience


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



  1. 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.
  2. 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:

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 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!


Challenging “Denial of Services 
for People with Developmental Disabilities in Self Direction”

Challenging “Denial of Services 
for People with Developmental Disabilities in Self Direction”

By Jim Karpe , March 2016


  • Burden of proof is on OPWDD to prove that a setting is segregated.

Any denial of service can be appealed thru a fair hearing. Start your request at

News from Fair Hearings

The Burden of Proof is on the Agency. A family on Long Island has successfully challenged the refusal by New York State to pay for a “community class” from a Self-Direction provider. They had a Medicaid Fair Hearing that established that the State had failed to provide credible proof of their claim that the services were provided in a segregated setting. “Accordingly the Agency’s action is not correct and is reversed.”

Fair Hearings for any refusal. That decision established that a Medicaid Fair Hearing DOES have jurisdiction over a refusal by the State to pay for services due to a claim that the setting is not integrated. In addition, it appears that the State has an obligation to inform families of their due process rights whenever there is a refusal. Over the past few years, the State has consistently failed in this “duty to inform”.

Challenge to the Settings rule.   Acting on behalf of my son, we have challenged the validity of the “community class” category and the other narrow categories for which OPWDD will approve funding. This case has not yet been decided. When it does, it should show up on the OTDA (Office of Temporary and Disability Assistance) site as:

If that hearing does not result in eliminating the overly restrictive categories then the case will need to go to State or Federal court. This is only possible after the administrative appeals have been exhausted.


You can take action if you have been refused services—whether provided under
Self Direction or under the traditional service model, no matter how long ago that was. Call up your local DDRO and request the restoration of services based on hearing #7245277H, referenced above. Tell them that you will be requesting a Medicaid Fair Hearing if they do not provide the services. They may tell you that you are not entitled to a Medicaid Fair Hearing for this particular decision. If services were discontinued more than 30 days ago, then they may state that you are past the time limit to request a hearing. Ask them to put that in writing (they will not). Since they did not provide notification of your due process rights, the 30-day clock never started ticking. Go ahead and request the hearing no matter what—unless of course they restore your services based on your phone call.

How to request a Hearing. If you have been refused Medicaid Funded services, then you have a right to a Fair Hearing. This is true no matter the situation. Insist they fulfill their obligation to prove that their decision was appropriate. To file for a hearing, start here:

Since the State did not inform you of your due process rights, select “My request is NOT about a notice.” You will get a letter within a few days acknowledging your request. The hearing will probably occur within three weeks of the request– and most likely a letter with the date of the hearing will come only a few days before the hearing.

 Challenging Denial of Services by Jim Karpe
for People with Developmental Disabilities


Services for People With Disabilities: Terrified about the future

Services for People With Disabilities: Terrified about the future
Report from the OPWDD Transformation Panel Forums              Sept 21, 2015

by Jim Karpe, NYC FAIR member  

As parents of adult children with disabilities, we hear beautiful words of a future with a wide range of individualized services. Meanwhile the actual system in place today continues to disintegrate before our eyes.  Programs and supports have been discontinued before alternatives have been developed.   The negative impacts we see are the result of poor planning or lack of planning. Or perhaps there is an evil plan, but most likely our adult children are the victims of incompetence.  The distinction does not matter to those individuals whose lives have been damaged by the gap between words and reality.

In Transformation Panel forums on Long Island and in Manhattan on September 17th, dozens of parents and self-advocates testified about the real obstacles to care they are facing.  Our population is so diverse, with a wide range of issues and challenges.  Yet over and over we heard the same thing from those different perspectives:  The system has stopped working, is un-raveling, has let us down, has abandoned us.  There is no monitoring, and there is no place to voice our dissatisfaction.

We also heard from OPWDD Acting Commissioner Kerry Delaney at the forums.  We heard Ms. Delaney acknowledge the need for transparency, but we continue to get very little data.  We heard acknowledgement that “one-size does not fit all”, but we continue to have policies which shut down the “fitting” options for the most fragile.  We heard that the transformation is “not about taking away services, instead about responding to actual needs and being sustainable.”  But meanwhile we watch the dismantling of the supports which were in place.  Individuals are getting pulled out of sheltered workshops where they feel valued and needed, and are instead “out in the community”—walking aimlessly around a mall, losing hope and regressing.  Other individuals are losing their homes of 20 or 30 years, since those homes are now alleged to be harmful “institutions”.  And those individuals capable of greater independence find that the Self-Directed programs of OPWDD have thickets of restrictions and forests of paper work.  The promise of Self-Direction was “you control your own budgets.”  The reality is that we can spend money only within narrow, non-overlapping categories.  It’s like the choice offered by the Model-T Ford: “You can have any color you want, as long as it’s black.”

People With Disabilities are getting forced out of options which were working—which did fit.  No one should be limited to sheltered workshops as their only option for activity.  But neither should anyone be forced out of a sheltered workshop that they treasure and which works for them.   Our actual needs are the same as every one else—housing, transportation, education, jobs, friends.  A full and meaningful life.

The fears, the concerns, and the stories were the same on Long Island and in New York City.  I’m confident they are the same in Upstate NY as well.  Ronnie, a plain-spoken self-advocate in Manhattan, captured the spirit of us all with his simple message to OPWDD: “You are not doing your job.”

This situation is not the fault of Olmstead.  That landmark Supreme Court decision has at its heart the right of the individual to choose the level of community integration they desire.  The fundamental issue instead is lack of courage.  For decades, New York State siphoned Medicaid funds to help balance the State budget.
(See )
That has ended, and in the aftermath:

  • Federal bureaucrats are punishing NYS for past fiscal sins, as the federal Centers for Medicare & Medicaid Services (CMS) puts in place regulations that restrict choice,
  • State officials have abandoned OPW, now that it is no longer a profit center,
  • With no political backing to fight for the individuals who need services, the Office for People With Developmental Disabilities (OPWDD) has become the Office for CMS Compliance.

Fundamentally, OPWDD needs to start advocating for People With Disabilities.  Has to stop falling over themselves in their rush to comply with every CMS edict.  Sadly, when they fall down, it is our kids who get bruised.  OPWDD needs to stop adhering to CMS regulations which damage fragile individuals.  And they need to stop going beyond those regulations!  New York State is putting in place policies and procedures which go far beyond what is required by CMS.

It comes down to us: Parents and self-advocates.  Our state officials must support our population, and must support OPWDD– and if needed, pressure OPWDD.  The appropriate response to many of the CMS regulations is not “Yes sir”, but “No way!”  Tell your legislator, tell the governor, and tell OPWDD itself, that we need to put People back into the center of the process.  Say no to serving CMS, and say yes to serving People.

Self-Direction Community of Practice meeting with Kerry Delaney, Acting Comm., OPWDD

By Lynn Decker

On March 30th, about 30 NY Metro families met by video-conference with Acting Commissioner Kerry Delaney and Kate Marlay, Deputy Director. Division of Person-Centered Supports, and Kate Bishop, Director of Health and Community Support, Division of Person Centered Supports.  This gathering was organized through NY Metro SD Community of Practice and we thank Mary Somoza for securing the meeting.

The agenda included the reduction in compensation to Fiscal Intermediary agencies that took effect on October 1, 2014, along with a variety of other elements of that “re-invention” of Self-Direction.  OPWDD staff recognized that the FI Compensation is an issue demanding attention, but stated they will be unable to re-open it for consideration with CMS until there is a year of experience data to present, and that can’t occur until July 2015 at the earliest.  They reviewed several measures they are offering to FI agencies in the meantime to provide financial assistance in the interim, including the Balancing Incentives Program grants that were announced in February.

Also discussed were the reductions in the available Personal Resource Allocation for some participants under the new formula, and the restrictions on rates and licensure for certain clinical consultants to Self-Direction plans.  OPWDD staff sought details from families to assess the impact of the first of these and possible alternatives or solutions to the other.

Exclusion of Individually Directed Good and Services (IDGS) funding for settings that are ‘specialized’ rather than integrated, which many families stated were the only suitable programs for their family member at this time, was also discussed.  Non-traditional but disability-focused programs that offer enhanced supports for behavior or physical mods that make it possible to develop skills needed for success in integrated settings are desired by many families, but excluded from Self-Direction funding.  OPWDD staff were less receptive to these concerns, saying that such settings needed to be made integrated in order to qualify for IDGS funds.

And finally, the inadequacy of the housing subsidy formula for any market priced housing in areas well served by transit was raised, along with inadequate support to access existing affordable housing offerings that may be appropriate.  The role of housing discrimination when approaching a potential landlord with documentation of housing subsidy on the basis of disability was also raised.

The commissioner expressed broad general recognition of family concerns and promised a face-to-face meeting with this group in the future.

If you or your family member are eligible for OPWDD funded services and wish to pursue Self-Direction with Budget Authority, you may request to join the google group for this parent effort at!forum/ny-metro-self-direction-community-of-practice

Lynn Decker

Executive Board Member, NYC FAIR