Self Direction— A Parent’s Perspective

By Kami-Leigh Agard

Parents of special-needs children, we can agree that affording services and recreational activities for our loved ones is a frustrating financial challenge. Plus, what about special-needs adults, whom after graduating high school have less resources and services? However, good news! Through NYS Office for People With Developmental Disabilities (OPWDD), Self-Direction Services (SDS) offers special-needs individuals autonomy in selecting whatever will improve their quality of life and opportunities for advancement.

The following Q&A about SDS from a parent’s perspective was first featured in The Rockaway Times in 2019 and is a powerful example of what proactive and steady parental advocacy could reap for your special-needs child. Meet Fred Rodriguez, local parent of 13-year-old Connor, who has Down Syndrome. Rodriguez gives solid insight about SDS—not just as a parent—but also, as a former SDS Broker.

KLA: Why do you say SDS was one of the best things you did for Connor?

FR: SDS gave us more financial freedom in affording activities for Connor, which we couldn’t before. For example, swimming, horseback-riding, soccer and piano lessons, and camp cost a lot of money. We knew that these opportunities would enhance his development and future. Before SDS, we couldn’t afford it, however with the program, now we can.

KLA: How is the money allocated? 

FR: NYS allots a yearly financial budget to every eligible child with the specific amount based on the child’s DDP-2 (Developmental Disabilities Profile) scores. This assessment is also used to determine your maximum budget amount, also known as the Personal Resource Allocation (PRA). Through a series of questions, it deciphers your child’s budget annually. It could be $30K or even $130K. You just utilize the annual allocation until the budget is done. However, you have to front the money first, then get reimbursed.

KLA: How does the reimbursement process work? 

FR: Receipts are submitted once a month. You have from the first to the tenth of the month to submit your receipts for the past month. Then within 30 to 45 days you receive the reimbursement. The only issue we’ve had is that we haven’t been able to spend all of the annual budget. The residual money you don’t spend, you lose. So basically, it’s use it or lose it.

KLA: You mentioned that SDS could be especially useful for special-needs adults. Why?

FR: If a special-needs adult wants to live independently, SDS would pay for their rent and a live-in caretaker. It just depends on what the allocated budget affords, based on their DDP-2 score.

KLA: So, there’a a lot of freedom with what you can afford through SDS, but how do you determine exactly what it will pay for? 

FR: Once approved for SDS, you’re given solid support and guidance from your SDS support broker and fiscal intermediator (FI).  A support broker puts a customized budget together and helps map out how to spend it. The FI serves as the bank. Medicaid allocates the money to the FI, to whom you submit all your receipts monthly.

KLA: How long does it take to get accepted for SDS?

FR: Before applying for SDS, the special-needs individual must have the state’s Medicaid Waiver; meaning going through OPWDD’s required Front Door process. The Front Door guides you through the steps involved in finding out eligibility for services, identifying needs, goals and preferences, and developing a plan to get those services. In our case, Connor already had the Medicaid Waiver; so, within two months after applying for SDS, he was approved. My wife and I were very assertive. You can’t just sit back and wait for the state or city, you have to aggressively advocate for your child. Once approved for SDS, it takes about 30 days for the broker to set up appointments with OPWDD, and the FI to set a launch date.

KLA: You took the course to be a SDS broker? Why?

FR: I took the five-day free course to become a SDS broker because I wanted to learn the ins and outs of the program for my son, and also, to counsel other parents on similar journeys with their children. It’s all about their well-being and preparing for the future.

Feel free to share your thoughts by emailing: kami@rockawaybeachautismfamilies.org. For more info about Rockaway Beach Autism Families’ monthly family support group meetings and upcoming events, visit us on Facebook/Instagram.