A Cross-Sectional Cohort Study of a Large, Statewide Medicaid Home and Community-Based Services Autism Waiver Program

Insights Results

Overview of article

• This investigation set out to replicate and extend findings on the Autism Spectrum Disorder (ASD)-specific 1915(c) Medicaid Home and Community-Based Services waiver program in Maryland
• Specifically for ASD, the Maryland waiver program (Maryland waiver) is the largest of its kind and includes a set of services identified to meet the needs of a child with ASD and the family unit: 1) Service coordination through the local school system; 2) Intensive individual support services (i.e., intensive, one-on-one interventions with the child/youth provided by a direct care worker); 3) Therapeutic integration (i.e., structured programs focused on expressive therapy and therapeutic recreation provided in a non-residential setting separate from the home); 4) Residential habilitation; 5) Respite care; 6) Environmental accessibility adaptations for the participants’ home (physical changes to the home which are reasonable and medically necessary to assure a safe therapeutic environment, e.g., installing a locked gate in the backyard); 7) Family training; and 8) Adult life planning services for transition from waiver services to the adult services delivery system
• This study collected data on another sample of Maryland families who were enrolled in the waiver program or were on the registry and waiting for enrollment. The authors first hypothesis was that waiver status would be associated with more improvement in family quality of life over the last year compared to registry status. For the second hypothesis, the authors predicted that waiver status would be associated with increased child improvement over the previous year in academic performance, independent living skills, communication skills, peer relationships, and problematic behavior. For the third hypothesis, in the waiver group, the authors predicted that more improvement over the last year would be associated with increased frequency or use of environmental accessibility adaptations, intensive individual support services, family training, therapeutic integration services, and respite care
  Methods
• There was a final pool of participants for matching of 552 families (waiver n = 282 and registry n = 270)
• The study took place from June 2011 through May 2012. In collaboration with the Maryland State Department of Education, mailings for the survey were distributed between July 29, 2011 and October 11, 2011 to all Maryland waiver families and a sample of families on the registry. Three separate mailings were made to follow up with non-response, and participants had options to respond via internet survey, paper survey, or phone interview. Families were permitted to respond to the survey only one time. Families were informed that participation was entirely voluntary and their identities would remain anonymous
• Statistical analyses were carried out to evaluate the effectiveness of Maryland waiver services compared to minimal services while waiting on a registry (i.e., control group)

Results

• The authors first hypothesis was confirmed; waiver status was associated with more improvement in family quality of life over the last year compared to registry status. The second hypothesis was partially supported. Waiver status was associated with increased perceived child improvement over the previous year in independent living skills, but not academic performance, communication skills, peer relationships, and problematic behavior
• The waiver might be associated with improvements in a child’s independent living skills and family quality of life. Other than Maryland, which maintains the largest autism waiver, 9 other states have adopted a 1915(c) waiver for autism, and seven more have reported interest in doing so

Key takeaways/implications

• This promising Maryland approach could serve as a useful model for other regions who wish to adopt ASD services to meet the heavy demands of a large public health burden