PFA Tips: You Finally Received the Autism Waiver: What Should You Expect?
You waited years on the Autism Waiver registry and you’ve just been told your child is approved to receive the Autism Waiver! Now the questions are swimming around in your head as you wonder what your expectations should be.
Once enrolled, the parent/caregiver is expected to:
• Maintain monthly contact with the Autism Waiver service coordinator.
• Allow the Autism Waiver service coordinator to observe your child 4 times per year, one of which must occur at your home, while the remaining visits can occur in school or other community-based program.
• Access at least one child-specific Autism Waiver Service per month. If lack of staffing prevents this from happening, you will report this to your Autism Waiver service coordinator.
• Report issues or concerns with services to the Autism Waiver provider and Autism Waiver service coordinator in a timely manner.
• Provide a safe and hospitable working environment for anyone coming into your home.
• Allow your direct care workers to receive supervision.
• Be an active participant in the development of the treatment plan with provider
• Cancel scheduled visits or sessions with an Autism Waiver service coordinator or provider in a timely manner; and provide at least two weeks’ notice if a change to the Autism Waiver Plan of Care needs to be made.
A parent/caregiver may not:
• Supplement the hourly rate of direct care workers.
• Provide mileage reimbursement for community outings.
• Expect the direct care worker to transport the child outside of the local community.
• Ask the direct care worker to provide childcare to other children in the home.
• Expect the direct care worker to shop for the family, cook meals, or clean the house.
What should I not expect from Autism Waiver services?
• Onboarding in a flash (due to staffing issues, parent choice, and staff turnover)
• “Onboarding” is the process by which the new direct care worker develops a working relationship with your child and family, in addition to being oriented to their specific job tasks and associated work expectations.
• An abundance of professionals to choose from (providers work very hard to attract and keep qualified direct care staff)
• Professionals with Applied Behavior Analysis (ABA) experience or high levels of autism experience (highly qualified professionals have a wide array of choices including private pay, private insurance, other community-based programs, etc.)
• Backup staff to fill in when staff cancel (providers may not have the capacity to provide backup staff, it may not be in a child’s best interest to provide a stranger as a backup, and many parents may not want a substitute who is unfamiliar with their child and their treatment program)
• Transportation services for the child’s appointments or travel beyond the local community (there must be a treatment plan goal related to all transportation requests)
• Funding for items and services outside of the Autism Waiver (e.g. therapeutic riding, summer camps, iPads)
• Staffing or funding for morning and afterschool care.
Autism Waiver Services and the Waiver Plan of Care
What services are available?
• Intensive Individual Support Services (IISS) – 1:1 goal-oriented support in the home and community
• Respite Care (includes approved camps) – 1:1 support provided in the home and community-based settings
• Therapeutic Integration (TI) Services – 1:3 supervision in an afterschool or weekend program
• Intensive Therapeutic Integration Services (ITI) – 1:1 supervision in an afterschool or weekend program
• Residential Habilitation Services – group home or alternative living unit placement
• Family Consultation – Support provided to the caregiver, based on the family needs, that is provided during direct contact with the caregiver
• Adult Life Planning Services – Available for children 16 and older. The planner provides guidance about the transition to adult living
• Environmental Accessibility Adaptations – $2,000 over a 36-month period to improve safety in the home
Why would my child not receive all Autism Waiver services?
• Some services, such as Intensive Therapeutic Integration and Residential Habilitation, require an application process and approval from the Maryland State Department of Education.
• Some areas of the State may not have a provider available (especially for EAA, TI, and ITI).
• A provider may determine that your child’s behavior is too challenging for them to safely manage. This is typically an outcome after all behavior management strategies have been implemented and shown not to be effective.
How are a child’s hours determined for IISS, respite, TI, and ITI on the Autism Waiver Plan of Care?
Service coordinators will consider the participant’s age, Level of Care assessment, parent feedback, and other services that are currently being accessed in order to determine an appropriate allotment of hours for each service. As the Autism Waiver Plans of Care are individualized, they should accurately reflect the number of service hours that the participant will be able to manage, in addition to their school day and any other activities.
Who determines what changes are made to my child’s services on their Autism Waiver Plan of Care?
Initially, the service coordinator may list all the available services on your child’s Autism Waiver Plan of Care to allow you the freedom to see what services best support your child’s needs and which ones do not. However, as you access the services and report how your child is responding to or managing various services, there may be times when the service coordinator suggests a change to the current Plan of care. Changes must be made with parent/caregiver input.
Thank you to the Members of the Autism Waiver Advisory Board Committee for their contributions to this article.
For more information regarding the Autism Waiver, contact the Maryland State Department of Education at 410-767-1446.
© 2019 Pathfinders for Autism