The following is a guest blog post by Kokua Network contributor Heather Johnson.
“Waiver” is a word that is bandied about a lot in the Intellectual Disabilities/Autism Services field. Waiver is actually short for Medicaid Home and Community-Based Waiver Program. When the government originally stepped in to provide funding for individuals through Medicaid, people were only being served in state-run institutions and similar centers. The waiver was created so that the federal government could “waive” the Medicaid rules for institutions and use those funds to provide services in the home and community instead.
Waivers are comprised of state and federal dollars. The contributions are not exactly even, not consistent across states and are adjusted each year depending on the budget. In Pennsylvania, the majority of services for individuals with an intellectual disability are funded through two types of Medical Assistance. Intermediate Care Facilities for Person with Mental Retardation (ICF/MR) are private or state-run institutions that are entitlements and cannot be capped or subject to waiting lists, although there are criteria for eligibility. Home and Community-based Waivers support people in their homes and/or the community. In Pennsylvania, there are two types of Home and Community based waivers, the Consolidated and the Person/Family Directed Services.
The Person/Family Directed Services Waiver, or P/FDS, is capped annually at $30,000. This is by far the more common waiver, and is generally used to provide day supports and transportation to individuals once they have aged out of the school system. Every year, the state government votes on a budget that allots a certain number of P/FDS waivers to graduates, called the Graduate Initiative. Most people with P/FDS waivers live at home with their families or on their own in the community.
The consolidated waiver is uncapped for individuals, meaning there is no top limit to the amount of funds available to pay for services. However, the statewide cost cannot exceed the cost of providing the same services in an ICF/MR. Therefore, there are far less consolidated waivers available for individuals and the waiting list is much longer. Consolidated waivers usually are used for individuals who live in a Community Living Arrangement (CLA or group home), Life-sharing, have intense medical needs or any combination of services that cannot fit under the $30,000 P/FDS cap.
There are many more waivers available to individuals depending on their diagnosis and specific need. For a comprehensive list of waivers available in Pennsylvania, you can visit http://www.dhs.state.pa.us/provider/waiverinformation/index.htm. Each waiver has different criteria and is designed to provide different services depending on the circumstances of the individual. The application also differs depending on the system providing the funding. Supports Coordination services are available once a person is registered with the county to help individuals and families navigate the process.
The unfortunate reality of the waiver system is that there are usually not enough funds to provide everyone with everything they want-we hope to provide individuals what they need to remain healthy and safe. However, there are many people (supports coordinators, providers, community resources, etc) who will help you advocate for yourself or your child in order to get access to funds. Waiting lists vary depending on the county, funding stream and application process, so it is always a good idea to look ahead into the future and be prepared early to get access to services.
Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.