Lessons Learned from Applying for Home and Community Based Services
Requesting services in general can be stressful at times but when those services are disability-related in an emergency, a situation can go from stressful to dire very quickly.
People with disabilities sometimes require assistance with needs that can range from dressing and bathing to feeding and toileting. When needs change drastically some require emergency care. Florida’s Agency for Persons with Disabilities (APD) has a process for requesting essential services. The following lays out vital information you’ll need and steps you can take to effectively ask for and, with hope, receive those services, especially when you are in a crisis situation.
APD serves people that have the following disabilities: autism, cerebral palsy, spina bifida, intellectual disabilities, Down syndrome, Prader-Willi syndrome, Phelan-McDermid syndrome, and children between the ages of 3 and 5 who are at high risk for acquiring a developmental disability. APD does have a long waiting list, some individuals have been on the waitlist for over a decade.
There are seven categories of the APD wait list that range from highest to lowest priority: Crisis, Children in Welfare System, Intensive Needs, Caregiver Over Age of 70, Transition from School, Age 21 or Over, and Age 21 and Under. Crisis falls into the highest priority on the waitlist. To be considered for this category the individual must fall into one of these three additional categories: homelessness or living in an unsafe environment; exhibits unsafe behaviors that can be a harm to themselves or others; and/or a caregiver is unable to provide for the individual due to illness, injury, or advanced age.
Three years ago, I requested services from APD due to my situation at the time which was deemed a crisis. My primary disability is cerebral palsy. In 2018 I woke up one morning and everything changed. Some say your life is going to consist of a handful of days that will change the course of your life. That morning was one of those days for me. At this time, I held a full-time job and I used county paratransit to get to and from work. However, because I lived outside the paratransit zone by less than a mile I took an Uber five days a week round trip just to meet the paratransit to get to and from work.
While on the paratransit vehicle headed to work that day in 2018, I started to feel strange symptoms that I knew weren’t related to cerebral palsy. I arrived at work, told my supervisor what was going on and she advised me to go to the hospital. From then on, my life has involved years of hospital stays, appointments with various specialists, and a multitude of different diagnostic tests. Three years later the doctors still don’t know what happened that day but they do speculate multiple sclerosis (MS) is the culprit. Multiple sclerosis is a disease that affects the brain and spinal cord. There is a special coating on the nerves in the body that is called myelin. With MS the immune system attacks the myelin coating on the nerves and that is what causes the disruptions of the signals in the body that communicate with the brain. In result, it causes a host of debilitating symptoms that can get worse over time.
My family raised me to be fiercely independent knowing full well they would not always be around to take care of me and they did a wonderful job in making me who I am today. When I suddenly went from doing everything independently, to, overnight, not being able to dress, bathe, groom, and feed myself, that was a drastic adjustment to say the very least. I knew I couldn’t do it all by myself anymore. The rapid decline of my heath prevented me from being able to work. I still remember what it felt like when I came home one day and an eviction notice was on my front door. With my family members now being older and most of them with severe health conditions of their own, I needed help from someone and fast. This is when I reached out to APD to see what they could do.
When I called the APD office assigned to my region I spoke to a very nice young woman. Between my health issues at the time and the threat of being evicted from my apartment looming over my head I told this person my life story and then some. To this day I am thankful because the entire time that I emotionally recounted my situation she did not interrupt me, not even once. After I was done, she politely replied “I’m not an intake specialist. I just run the front desk.” At that, I started to profusely apologize to her but she told me not to apologize but she did request that when I send in my application for services to attach a letter with everything, I had told her. I did exactly that.
Since that day, I’ve learned many things on my journey to receiving APD services during a crisis.
Write a Personal Letter or Statement: An application can only tell the person reviewing it very little about you and what your needs are. Writing a letter or personal statement gives an opportunity to describe in detail your situation and your needs.
Be Thorough: Even though applications don’t leave much room to be as detailed as one would like, it is important to be thorough. For example, if you need assistance bathing don’t just put bathing assistance on the application. State the reason why that type of assistance is needed. Some disabilities can cause balance issues that can increase the risk for falls. All these details need to be stated and if there is no room on the application, include them in the attached letter.
State in Detail How Not Receiving Services Will Impact Your life: APD wants to know what is needed and why. It is important to describe what is needed and also how the individual will be affected if they don’t receive assistance. Everyone has good and bad days with their health for the most part. For myself, there are days when I can do a little more without total assistance, but I know that can literally change in the matter of seconds. Keeping that in mind, state what you need help with at any given moment during the day or night.
Keep Track of Who You Communicate With: Keep records of who you communicate with whether it's by phone or email. The application may have to be reviewed by more than one person. If communication occurs with more than one person, which it will, creating a log will allow the ability to refer back to who last looked at the application. It makes the process less stressful for the applicant, their family, and the person reviewing their application.
Follow-Up: It is crucial once the application is sent to APD that the status of it is periodically checked. It will give you peace of mind to know what stage the application is in. Sending reminders is always good. Consistently following up will remind whoever is reviewing the application that there is still an urgent need for services.
The process of requesting services from APD can be overwhelming but going through the process myself I learned those five lessons. For those reading this article I hope that the lessons I learned along the way can help someone prepare or navigate the process that is involved while requesting services from APD.
To find out more information about the Agency for Persons with Disabilities and to apply for services please go to apd.myflorida.com/