This is blog post is one in a series by contributing blogger Heather Johnson.
Once you have your waiver, you are eligible to start receiving services. This blog series will explain and explore some of the more popular services, but before we get into specifics, here are some general things to know:
*If your waiver has a cap, you cannot go over that amount of money. This sometimes means making hard choices, such as between summer camp or respite. Also, keep in mind that if you are at the cap, you still might have to make hard choices in July when the new fiscal year begins, because services can increase in price between one year and the next. Always be prepared to have to re-evaluate your services regularly based on cost.
*Putting services in place is not a fast process. Usually it takes three to six weeks to begin services. The first thing that happens is you’ll have a meeting with your supports coordinator (SC) to discuss what the needs are and what options are available. Next, your supports coordinator will send out referral packets to provider agencies, which basically serves to give basic information about the individual to see if the provider has vacancies or a staffing match. After that has been established, you’ll either take a tour of the facility so everyone can meet each other, or have an intake meeting at home. If everyone on the team agrees, a start date will be established. The SC will then do what is called a critical revision to the individual support plan (ISP) to start the service, and submit it to the county. The county Administrative Entity (AE) requires at least ten business days to approve a service; keep that in mind when beginning services. In emergent situations this can be circumvented, but is not recommended.
*You will not get paid money from the county or federal government. Many people have the idea that they will get a lump sum of money to spend as they see fit. The process is this: once you have a service in place, the provider bills the waiver directly. There are some options for more control in terms of hiring staff or becoming an agency-with-choice provider, which are very complicated but work for some incredibly organized individuals with time to invest. For more information on PPL (a company that provides alternative service arrangements) and agency-with-choice (AWC) providers, reach out to your supports coordinator.
*Primary caregivers, in the majority of situations, cannot also be staff. Unfortunately, you can’t be paid to provide care to your child. Sometimes a family member can get hired by a provider to provide services, but rarely ever the primary caregiver.
*There are sometimes qualifications that have to be met before certain services can be provided. For example, if an individual should need nursing, a letter of medical necessity is required from the doctor as well as a denial letter from the insurance company. For job services, the person must have gone through the office of vocational rehabilitation (OVR) and obtain documentation that either the 90 days of services have been used or the person is not a good fit for OVR. The reason for this is the waiver is the payer of last resort-if there are any other possible funding streams for any service we have to attempt to go that route first.
*Consolidated waivers are incredibly scarce. It’s a lovely idea to have your adult child fly out on their own by moving into a community living arrangement (called a CLA or group home) and having a job while you still live at home and are healthy, and ideally, that would happen for everyone. Unfortunately, there just isn’t enough money to go around. Right now, some people in dire situations do not have services because funding is not available. If an individual is safe where they are, they will not be prioritized for community placement. I apologize for the harsh truth; the funding is controlled at the government level. If we as a community really want change for our adult loved ones with disabilities, we all need to get on the phone with our legislators and demand funding for Medical Assistance, it’s the only way to get the money we need.
As always, should you have questions about waiver funding you can contact your Supports Coordinator, your county Administrative Entity, or me.
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.