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OPWDD will be holding a Public hearing videoconference at sites around the state to gather input for the Statewide Comprehensive Plan 2018-2022, on September 25th, from 3-7pm. Anyone can attend, but you have to register If you want to speak. Registration closes September 15, but there are only a limited number of spots. Go to

But EVERYONE can submit written comments by Sept 25! Keep in mind:

Your comments can be one or two paragraphs only, a few sentences, or just a list of bullet points. A brief story about your family member is helpful, but not necessary.

OPWDD reads all submissions, and tracks the number of comments/recommendations on specific issues. This is your chance to advocate for the issues that are important for people who self-direct. 

Quick Read

By 2024 almost all OPWDD services will be delivered through managed care. A Care Manager will expand the role of the MSC, and “coordinate” each enrollee’s Medicaid medical, behavioral*, and other “wellness” services, as well as long term care (this includes self-directed services). The State’s goal is to improve the quality of care, improve health, and lower costs. However, in delivering Self-Directed Services through managed care, there is clear potential for limiting options for people who self-direct. 

*The term: “Behavioral health” refers to what used to be called “mental health”

OPWDD has committed to continuing self-directed services. However, as of yet they have not clearly spelled out how self-direction with employer and budget authority will work under a managed care system operating under the direct authority of the New York State Department of Health. Self-direction’s goal is to maximize individualization and choice: Managed Care Organizations traditionally succeed by limiting options.

For those who use self-directed services, what will managed care mean?

  • Will there still be room for creativity and choice?
  • Will managed care organizations steer people into more “cost effective” group settings?
  • Will budgets be cut, limiting peoples’ options to live outside the family home?
  • Will we still be allowed to pay staff wages comparable to OPWDD agency rates?

What can you do today?

  • Are you ready to write a brief letter to strengthen self-directed services now? See Issues to consider for comment and Letter Writing just below. Send your comments to:

  • Do you want to see OPWDD’s official request for comments?

Go to

Issues to consider for comment - Self-direction must continue to be a viable option under managed care.

Here’s what’s needed: 

  1. Assessment that is objective and able to document all support needs
  2. Adequate funds to support people 24/7, with staff and use of technology
  3. Financial support to pay for non-certified housing, and knowledgeable people to assist in the process
  4. Sustainability:  supports for people who don’t have a parent or other caregiver to assist them to self-direct
  5. Continuation and strengthening of self-directed supported employment

Assessment: Coordinated Assessment System

Currently, New York State uses a test called the Uniform Assessment System to support care planning and service delivery for all Medicaid agencies except OPWDD. Recently, OPWDD has adopted the Coordinated Assessment System (CAS) which adds 16 domains to the UAS to help identify a person with I/DD’s behavioral and medical needs. The goal is to eliminate silos between different departments and to coordinate services. However, its effectiveness is still being evaluated.

People who self-direct are the only group whose supports and services must fall within a dictated budget.  Because the budget is determined by the assessment, accurate testing is critical. We have recently become aware of problems with administration of both the currently used DDP2 and the CAS, which will eventually replace it.

Two families recently reported that a DDP2 was administered to their child by someone who didn’t know them, without either the parent, broker, or their MSC. An unknown MSC was present. The families found out about this when they got a notice their budget was being decreased. Clearly, this is not how the system is supposed to work.

We have had mixed reports from parent and brokers about the CAS. Some assessors are doing the work thoughtfully, but others are asking multiple direct questions, rather than having a conversation that drives a nuanced understanding of the individual.  This especially is an issue for people with chronic intermittent problems, which may easily may be swept under the rug when the assessor is not thorough. Because of the way the assessment tool is constructed, a rigid, superficial approach causes fewer domains to be explored, and support needs can go undocumented.


OPWDD should provide evidence that limiting some questions about health and safety issues to the last 3 days provides valid, predictive information in this population.

Given the importance of a numerical score for people who self-direct, develop a grievance process to address significant disparities between the assessment score and the on the ground assessment from those who interact daily with the person.

As we have previously suggested: Develop a post-assessment feedback form for family/circle of support that will result in actionable data.

Supported Employment

After CSS ended in Oct 2014, job coaching could still be self-directed, but most people could no longer hire a job developer to help them find the right job. OPWDD has suggested, on the basis of a recent review, that people who were self-directing were less likely to be employed, and that SEMP should no longer be offered as a SD service. 

After hearing a brief summary of the research, we concluded that the data used was probably flawed, and therefore should not be used as the basis for change in policy.

Currently, in order to access job development services through OPWDD, a person who self-directs is required to use an agency program. This is not an efficient way to deliver services to someone who self-directs:

  • It can cause a major strain on the budget, and significantly decrease the total amount of an individual’s support time. 
  • Much of the “Discovery” part of Pathway has already been done by the circle of support.
  • A significant number of people who use Self-Directed Services work at integrated, minimum wage jobs, but for only 2-10 hours a week. The “job coach” functions to support the person’s interaction with others, behavioral challenges, safety, etc. Innovations job coach training adds little in this setting. If SD SEMP is eliminated, people will continue going to work with their community hab worker, but the hours will not be reflected as integrated employment, a valued outcome.


Instead of doing away with Self-Directed SEMP, OPWDD should strengthen the program:

A competitive budget line for job developers

  • A person-centered approach to training requirements for job coaches (e.g., no requirement for expensive and time-consuming Innovations training, if the job coach functions primarily in the role of a community habilitation worker)
  • If a job coach needs specific task training to support an individual at their workplace, the job coach be funded to be trained in a discrete task or group of tasks.
  • To gather data about effectiveness, this could be run as a pilot program. 

Enhanced Broker 

Some people who self-direct are able to take an active role in the long-term and day to day management of their plan, but most cannot. When self-direction was first piloted in the early 90’s, it was believed that real community inclusion would result in people developing “natural supports” that would, over time, take the place of some paid direct support and administrative roles. Unfortunately, this goal remains aspirational for most of us. For self-direction to survive as an option for everyone, a structure must be set up to act in the “parent” role when a parent is unavailable.

Broadly, the parent/guardian fulfills three roles in supporting people with I/DD to self-direct.

  1. The executive part: hiring and training direct support staff and consultants, setting wages, addressing problems that arise with staff, deciding on the need for medical attention, budget decisions, and more.
  2. The hands-on part: arranging for (or filling in as) coverage for people who need 24-7 in both planned (staff vacations) and unplanned (staff illness, car problems, storms) circumstances
  3. Paperwork: timesheets, monthly reports, vendor paperwork, etc.

(Currently, there’s a budget line for “self-directed staff support, but the pay rate is low for the level of responsibility, e.g., ensuring Medicaid compliance).

Currently on Long Island we know of two self-directing individuals with significant support needs who are without family or guardian support. In both cases, brokers have assumed the “parent” role successfully. However, this is the exception, not the rule.


Establish an “enhanced broker” who will close the gap in the service delivery system and enable people to age in place in their communities using self-directed services. This will allow for sustainability. 

As the 1115 is a demonstration waiver, this would be worthwhile small pilot program. It could be used both for people who do not have an active parent or guardian, and for those whose parents are unable to fulfill the role.

Access to self-direction for people who need 24/7 support

Currently, when people using Self-Directed Services live out of their family home and require 24/7 support, a family member is required to provide some number of hours of direct care on a regular basis. (We’re talking about “You will be covering every Wednesday from 9-3,” not, “why don’t you come over for dinner tonight, your cousin is visiting”).

Some people with I/DD don’t have family caregivers, and all caregivers will age and die. Inevitably, emergencies arise for staff, and as people age, their support needs often become more intense or complex. 

The cost of people living in a group setting and attending a traditional program far exceeds the cost of supporting a person with I/DD in a community setting in almost all cases. Further, it is well established that many people currently live in more restrictive settings than their needs dictate.

Fairness (and Olmstead) dictate that there should at least be parity: if it costs X dollars for a person to live in a group home, the same amount should be available to live in non-certified housing with all necessary supports and services. 


Provide adequate funding and infrastructure to support people who self-direct and require 24/7 support


When people move out of their family home or a more restrictive setting they will need assistance to find housing that is right for them, and funding to afford it.

Fairness and the Olmstead decision dictate that if the state will support someone to live in a group home for X dollars, the same amount should be available for someone to live in anon-certified home in the community. 

This still leaves the issue for the individual of how to go from wanting to move, either from the family home or certified setting into a home of their choice, with or without roommates.

Seeing this need, OPWDD awarded a grant to NYSACRA to design and implement a “Housing Navigator” curriculum, and a number of people have already completed the program. The goal is for graduates to be “qualified to create housing opportunities for individuals and to develop agency capacity for more housing options.”  (From NYSACRA Center for Innovations and Development Training Academy).

This pilot was successful:  we believe there should be enough housing navigators to serve anyone who needs one across the state. 


Everyone who self-directs and chooses to move into a home in their community should have access to housing navigation which should be a billable Medicaid service usable by people who self-direct.

Suggested letter writing guidelines

  • State you’re a parent or guardian 
  • Describe the issue, and how it affects your child
  • Offer a potential solution –Your own idea or one we’ve described above

Most important: Don’t let the perfect get in the way of clicking send! They count the responses, and it’s more important to get your opinion out than to make it perfect.

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