RD439 - Services and Support Needs of Individuals on Waiting Lists for Intellectual and Developmental Disability Waiver Services (Item 307.S) - December 1, 2015

Executive Summary:
During the 2015 Session of the General Assembly, the Department of Behavioral Health and Developmental Services (DBHDS) was directed to submit a report concerning the waiting lists for the Intellectual Disability (ID) and the Developmental Disability (DD) Medicaid Waivers.

"307 S. “The Department of Behavioral Health and Developmental Services in collaboration with the Community Services Boards shall compile and report all available information regarding the services and support needs of the individuals on waiting lists for Intellectual and Developmental Disability (I/DD) waiver services, including an estimate of the number of graduates with I/DD who are exiting secondary education each fiscal year. The department shall submit a report to the Chairmen of the House Appropriations and Senate Finance Committees by December 1, 2015."

Specifically, DBHDS completed the study of who is on the waiver waiting lists and what services are being sought. This was completed by surveying the case managers of the individuals on the waiting list as of the fourth quarter of FY 2015. Virginia has not previously tracked its waiting lists as to what services individuals are seeking. The waiting lists have been managed by urgent need (ID) and chronologically (DD). Wait lists are composed of names of individuals who have waived receiving services in a facility funded through Medicaid, known as Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs-IID, in order to receive services in community settings. Individuals are placed on the waiting list to receive a Medicaid funded waiver slot. New slots may be appropriated by the General Assembly or may become available when a currently funded slot is vacated. In the interim, individuals are placed on a waiting list for either a DD or ID slot. Individuals on the waiting list also have agreed to accept and begin receiving services within 30 days of being awarded a slot.

The Intellectual Disability and Developmental Disability (I/DD) waiver waiting lists as of September 4, 2015 are comprised of the names of 10,242 persons with I/DD who are seeking one or more Medicaid-funded waiver service. Approximately 3,400 individuals on the waiting list receive services on the Elderly or Disabled with Consumer Direction Waiver (EDCD), primarily case management, consumer directed personal care and respite care, while waiting for the more comprehensive array of services available in the ID and DD waivers. The information contained in this report was derived from an online survey completed by community services board (CSB) and DBHDS staff. The survey was developed by DBHDS and is not a standardized instrument. Case managers reported information for 94 percent of the individuals waiting for services. Overall, two thirds of the individuals on the combined waiting list are 22 years of age or younger and primarily reside in the Northern Virginia and Richmond areas. Slightly less than half of the individuals have a significant medical, behavioral or mental health needs in addition to their developmental disability, as reported by the case manager.

The large majority (one half to two thirds) of individuals and/or their families expressed a preference for services in the family home, such as in-home residential supports or personal assistance, rather than out-of-home residential services such as group homes. Similarly, community-based day activities, as well as after-school/weekend activities, were the most popularly expressed day service needs. It is significant that home-based and integrated day services were preferred over center-based day and congregate style residential services as this represents a departure from the norm (see Figure 3). Other strongly desired services include access to respite and assistive technology. Given that most of the individuals on the waiting list live with their families, access to respite services and assistive technology helps families preserve the ability to provide care and supports to their family member. In addition to in-home services, integrated community based day services were listed as a priority. These community-based day services enable the individual with a disability to more effectively navigate his/her environment, communicate with others and maintain safety and independence. Both services have cost containing limits (i.e., number of hours or dollars per year) within the waivers. Overall, the case managers completing the survey were asked to project the number of hours of paid supports that the individual may require over the next five years should a waiver slot be assigned. These projected hours are less than those currently receiving similar services in the ID waiver. The preference for integrated day and in-home residential services are consistent with Virginia’s plans to redesign these waiver services. According to information obtained from the Virginia Department of Education, as many as 10,000 youth with I/DD may be graduating from the secondary education system in the next five years (see Table 4). Some of these individuals are already on the waiting list for I/DD waivers. In addition, some of these future graduates will not require waiver services. Therefore, Virginia cannot at this point accurately project who will present for waiver services. DBHDS recognizes that all of the graduates will seek some type of daily activity (employment, volunteering, integrated day services) once they have completed their education and the waivers are the primary means of funding these services.

The data collected support the need to increase access to less intensive services, which may be provided through a supports model waiver. Supports waivers focus upon service provision within an individual’s own home and accessing local community resources. The current DD Waiver is a supports waiver. The waiver redesign plan is to amend the current DD Waiver, which serves individuals with a developmental disability excluding individuals with an intellectual disability, into the new Family and Individual Supports Waiver. The redesign starts from the assumption that the majority of individuals not only can be supported in their own homes, but individuals and their families prefer in-home and integrated community services, as validated by the survey. All three of the current waivers will be amended to serve individuals with developmental disabilities, and not exclusively serve those with intellectual disability. (Intellectual disability is a specific subset of the broader term, “developmental disability.”) This will provide more integrated community based options in each waiver.