As a group, we know that through a person-centered process involving a Circle of Support (including family, MSC, CSS Broker, school personnel, job developer direct support worker, behaviorist, etc.), families and self-advocates are helped to achieve self-directed lives. They can get as much or as little support as they wish in hiring and training staff, developing community activities, work, school, etc.

Additionally, as we mentioned in the post dated January 29, 2012 above, NYSELFD submitted recommendations to OPWDD specifically addressing the needs of families using CSS, for more support, especially options for staff back-up, and long-term care needs. As the 1115 Waiver process continues to roll out, we hope to be active in developing creative solutions to these critical issues.

I am Mary Ellen mother of a 20 year old named Peter who receives CSS. Thank you.

Commissioner Burke and the Waiver Design Team:

I am the parent of two children on the autism spectrum who have received intensive special education services through the Departments of Education or Health and Mental Hygiene since they were toddlers, and case management, recreation, and residential habilitation services from OPWDD funded agencies since about 2005. This year, my boys moved into a residential program. Our experience with this move illustrates some limitations of the family service model, and some possible areas of overservice and overly restrictive intervention in residential settings.

Additionally, I have worked as a Medicaid Service Coordinator, and as a Program Director for a Day Habilitation w/o Walls Service at another OWPDD funded agency. I have trained to work as a Start Up Broker for Self Determination plans. From those experiences, I have a number of comments about transparency in the service system and challenges in the shift of expectations from ‘compliant activities’ to participant outcomes – a shift that in theory I heartily endorse. I do share a number of concerns about the instrumentation as suggested in the 507 plan, particularly some features of the DISCOS, but overall I support the direction of reform.

First, about my boys, who are now 13 and 15 years old. Evan and Justin moved to the Center for Discovery in Sullivan County in May of this year, and five months in we are very satisfied with the quality of the program and the outcomes for both boys. Both have made big strides in their independence in activities of daily living, and Evan has dropped more than 60 pounds. Portion control and overall food intake was our biggest and most intractable behavior issue with Evan, and we now believe he can reach adulthood at a healthy weight. Programming sufficient physical activity for teenage boys in our dense urban environment where supervision needs to be quite close to maintain safety was our second challenge and for both boys we have seen improvement in sleep and for Evan, physical fitness. I could continue with accolades for the Center, but want to focus on why we sought residential school placement.

Previously, our boys attended the New York Center for Autism Charter School, which offered an exemplary program of instruction using applied behavior analysis (ABA). We received service coordination, recreation and at home res hab from QSAC. And yet, my husband and I continued to feel overtaxed, as if we were hurtling down the highway at high speed toward some fixed obstacle without brakes as our boys got bigger and stronger, and we grew tireder, weaker and less capable of responding effectively. We each have developed chronic, probably stress related, health conditions that play a role as well. It is possible that no level of intensity of service would have addressed our family’s needs, but our guys allotment of res hab was dictated by the agency’s contract more than our need. Our res hab specialist got her most useful training and supervision from school staff, who already possessed more insight into what was effective with our kids than what our res hab agency could reasonably develop. In our case, supervision of our parent request employee did not add much in value, yet captured the lions share of the cost due to Medicaid compliance activities that agencies are apparently uniquely able to perform. I estimate that the amount billed by our agency across two boys would have provided for one full time employee at our house, including benefits for her, and provided us with far greater support and staff retention prospects.

However, our placement did get a closer look from a State Education reviewer who as best as I could determine was interested in directing students currently placed out of state to the Center and therefore preferred we choose one of several new programs that were created with stated purpose of returning or diverting students from being placed out of state and which are in New York City. I should be glad that some new service opportunities were created, for whatever reason, and I appreciate that this is something that could be agreed upon in Albany. Setting aside the geographic fact that many programs in New Jersey, Pennsylvania, Connecticut and even Massachusetts are nearer to most of the service population in NY State than to many New York programs, from a parent perspective, it is the quality and appropriateness of the program that matters more than its location. The concerns of parenting a child with challenging special needs easily trump those of a taxpayer, and the only legitimate way to address the chasm between those two perspectives is to create quality alternatives.

On overly restrictive service, I have two observations about my boys’ placement. At the Center for Discovery, the residence is defined as an ICF, and includes a full time nurse per 15 residents. Given the low medical needs index of the children served there and high behavior occurrence, I think a master’s level behavioral specialist would be far more helpful than this intensity of nursing. Second, upon admission at the Center my guys were assessed for their feeding and recommended for bite sized food preparation, even though they have no history of choking. Ninety days in, this was re-assessed, and is now less restrictive. However, I continue to believe that in my guys case this practice poses a risk of losing skills and creating an obstacle to their adjustment to a new setting that overwhelms the theoretical gain in safety that might have resulted. Even in spite of this week’s NY Times article detailing choking deaths in OPWDD agency sites, I find this another of many instances in which procedures that are suitable to a medically fragile or physically impaired population are applied to persons who do not share those particular vulnerabilities, while other services that are sorely needed are neglected. People who have in common their vulnerability are not all the same. Protections that are essential for some people are frustrating and sometimes degrading for others.

On transparency in the service system, I commend OPWDD on the Early Warning framework and the publication of agencies with MSC availability online. The proposed agency quality scale looks promising as well, though one wonders how much it will cost to produce.

However, I encourage individual level transparency as well as agency level, and have a relatively easy suggestion of how to deliver it: when I provided MSC to an individual with Medicare and Medicaid, he received a quarterly statement of services billed from CMS. We reviewed this statement together, with a focus on dates of service, occasionally finding billing errors (but thankfully no fraud). I recommend that individuals and families receive statements of services billed to Medicaid, which promises to be a check on fraud and an education for families. If capitation is truly binding on services, you will need to provide consumer feedback on utilization against the capitation and compared to program enrollees with similar assessed needs.

Finally, when my guys reach adulthood I anticipate that we are likely to develop a self-directed program. As an MSC and program director I had contact with a number of self-directed participants. At present, self-direction requires families to choose between the known of agency services and ‘flying on their own’ to an unrealistic degree, with little support for hiring, training, and oversight. The mini-brokerage model in use in my home state of Oregon looks promising to bridge this gap, where family members sit in on each others’ support team, offering additional natural resource and informal accountability, and where employees of the brokerage can serve as backups for vacations, illness, and the like.

Thank you for your attention,

Lynn Decker

Allen A. Schwartz, PhD