For every parent who watches their child morph into a young adult right in front of their eyes, this transformation is filled with anticipation, uncertainty and limitless challenges. For the parent with a child on the autism spectrum these issues are magnified as they begin to explore the world of supports funded and regulated by New York State’s Office for People with Developmental Disabilities (OPWDD). Of course, many families receive some OPWDD services when their children are younger, often in the form of respite or after school programs. In fact, almost 25% of all people served by OPWDD are under the age of 22. However, by the time students reach 16 years of age, families need to begin planning for the days after graduation from school. Effective and thorough transition planning is absolutely crucial to help determine what supports the young adult will need to lead a productive and fulfilling life. Complicating this process is the current transformation of virtually every service offered by OPWDD, including various day and residential supports, employment services, as well as those services offered through a self-determination approach. Some of these changes are driven by reforms of long-standing funding reimbursement formulas. However, much of OPWDD’s transformation is derived from initiatives on the part of the Federal government, whose effort is focused on ensuring that individuals with developmental disabilities are actively engaged in the full complement of available community experiences.
Nationally, the rate of employment among individuals with developmental disabilities is extremely low and New York lags behind many other states. OPWDD submitted a plan to the Federal government focused on how they would improve this situation. The plan calls for the number of people in competitive employment to increase by at least 700 individuals annually. Competitive employment is defined as employment in an integrated setting, in the general workforce, where a person earns at least minimum wage. To achieve this goal, OPWDD is creating a new service called Pathway to Employment, which focuses on comprehensive career planning. It will provide assistance for participants to obtain or maintain competitive employment. This service is now becoming available and it engages a participant in identifying a career direction; provides instruction and training in pre-employment skills; and develops a plan for achieving competitive, integrated employment. Within 12 months, the outcome of this service is intended to be a determination of the participant’s stated career objective; a detailed career plan to guide individualized employment supports; and preparation for supported employment services and obtainment of a job.
Current reimbursement rates for OPWDD’s supported employment service are problematic as they are designed in such a manner that assumes a job coach will eventually fade from the job site and the individual will remain employed without on-site supports. We know that for many individuals on the autism spectrum, acquiring job skills is only part of the reason why support on the job is necessary. Often their communication deficits and/or behavioral challenges require long-term supports in order for them to retain their employment, and therefore, a job coach may be needed long-term to ensure long-term success for the individual. Fortunately, OPWDD’s proposal for revising the funding for supported employment is being designed to allow a job coach to remain in place as long as the individual needs that support.
OPWDD’s plan also calls for the closure of all sheltered workshops in 6 years, due to the fact they are segregated environments that do not afford the opportunity for typical interactive exposure with people without disabilities. New York’s sheltered workshops collectively serve almost 8,000 individuals. OPWDD anticipates 50% of these individuals will transition to some form of competitive employment within the next 6 years and OPWDD will be giving individuals, and their families, information regarding employment alternatives. Those that will not choose this path may have either medical or behavior-related issues that would create significant barriers to employment, or they may be of the age to retire. Alternate options for these individuals include: support services at one’s home, self-directed supports, or a day habilitation program. Many who are new to the workforce will begin with part-time positions as they test out their job skills and attempt to match their interests and skills with available jobs. In addition, there are other individuals with more severe and complex disabilities that may not have the interest or skills to acquire employment. In either situation, there must be a system in place to ensure there are meaningful activities available during times when their family or caregiver is working. Traditionally, New York State has always made this commitment, while many other states have not. With the myriad of changes in OPWDD services, advocates need to ensure this level of commitment is maintained. The Commonwealth of Massachusetts published a document in November 2013 regarding their supported employment program entitled “Blueprint for Success,” which states that Massachusetts “…remains committed to providing individuals’ needed day services in a manner that maintains stability for families and residential providers during non-work hours.” If New York reaffirms a similar commitment, it would alleviate many uncertainties families may have.
For individuals who will not be entering the world of employment anytime soon, OPWDD’s day habilitation programs offer an alternative service. These programs are designed to assist an individual to acquire needed skills in self-help, communication, social and recreational areas, among others. Due to the Federal government’s advocacy to ensure full community integration, over the next couple of years many of the existing day habilitation locations will need to modify their programs to ensure that participating individuals receive their services in as integrated environments as possible. This will result in participants spending more time in volunteer experiences, or receiving their supports in natural community locations surrounded by people without disabilities—as opposed to segregated large program locations.
Over the past 5 years, OPWDD’s funding for new residential services has decreased significantly when compared to previous levels. In addition, the Federal government has been advocating the greater use of integrated environments for residential supports. As a result, the focus on residential services has changed from one that relies primarily upon OPWDD certified group residences to a greater emphasis of providing supports in families’ own homes or in typical community-based housing. This approach may certainly benefit many individuals, however, those who need a greater level of support or supervision may find this approach lacking. For individuals residing with aging parents, remaining in their family’s home may not be a realistic option. In addition, with the lack of affordable housing in many communities, most individuals’ SSI payments are insufficient to afford rent in regular community-based housing. Even if affordable housing is found, sometimes the budget created for an individual may not cover the cost of 24-hour staffing. This specifically becomes a major challenge for individuals on the autism spectrum. Reliable residential waiting list data is admittedly limited. However, according to June 2014 information from OPWDD, there were 6,436 individuals in need of residential services within 2 years and another 5,309 individuals who needed residential service by 2020. These numbers are daunting by anyone’s measure, and it is highly unlikely OPWDD will have the resources in the near future to address this level of need.
Since 2011, OPWDD has been planning to convert its statewide system of services to a managed care model. This is, however, a New York State initiative and not a Federal one. Instead it is part of the Cuomo Administration’s plan to bring all Medicaid under a managed care umbrella. While there are many divergent opinions regarding the benefits of managed care, it can be an effective method of delivering services and data does indicate improved healthcare outcomes for some people enrolled through Medicaid. However, its effectiveness as a tool to provide long-term support services to individuals on the autism spectrum (or any other developmental disability) with the statewide scope of New York’s services is untested nationally. Under this plan, instead of paying providers directly for each service they provide for an individual, OPWDD will pay managed care entities a capitated rate (a per person per month amount) and they in turn will pay providers for each service. These managed care entities would be responsible for coordination of all Medicaid funded services including OPWDD, healthcare, mental health, substance abuse, and personal care. Enrollment in the managed care program will be voluntary for individuals during at least the first 2 years. While this program was originally slated to begin in 2013, it has once again been delayed. OPWDD has recently begun a review of its managed care plan and a new start date will not be announced until this review is completed.
In summary, the scope and pace of changes in OPWDD services is staggering to many. As a result, families need to ensure that they afford themselves sufficient time to properly plan the best match of services to meet their needs. In spite of the uncertainty that surrounds us, we still need to remember that New York maintains the most comprehensive array of services to people with intellectual and developmental disabilities in the nation. That still counts for a lot, and should provide a degree of comfort for the future.
For more information about the InterAgency Council of Developmental Disabilities Agencies, Inc., visit www.iacny.org.