Updated: Jan 27
Carmen and Mike Long have been married for 35 years and have four exceptional children. Now, all their children are adults and have moved out of the house, except, Alyssa. Alyssa was born with developmental disabilities, and all of Alyssa’s personal care is dependent on others.
The Longs have hoped that Alyssa would eventually be able to live on her own and be able to redefine what her adult life would look like, but unfortunately not much has changed. Alyssa’s bathing, toileting, and dressing are all reliant on her parents.
Alyssa’s day starts bright and early at 5:30 a.m. to meet the van that picks her up and takes her to Hi-Hope Center. A caregiver is typically at the house to get Alyssa off the van and take care of her in the afternoon and get her ready for bed, but due to the direct support professional shortage, there are many days when that responsibility falls on Carmen because someone cannot come for just an afternoon shift. Alyssa goes to Hi-Hope only four days a week. After four six-hour days, she is so tired Carmen cannot even get her out of bed. One day a week, a caregiver should be at the Long’s house taking care of Alyssa, but they have not had that type of assistance in over a year and a half. The issue is that the direct support professionals' hourly wage is so low that only working one day a week is not worth the drive to the Long’s house. Thankfully, Carmen works from home and her schedule is more flexible than most, but she is still working and cannot take a day off work every week.
Unfortunately, there has never been a consistent caregiver in Alyssa's life. Carmen and Mike understand that it is no one’s fault, but people who are willing to work for only $10 or $11 an hour are in a financial struggle and have to keep looking for a better paying job. That makes it very hard to have that one consistent person in Alyssa's life. In addition to the difficult financial situation of a DSP, it takes a special person with a heart for the work. It is not an easy job.
In a perfect world, Alyssa would have a caregiver that she sees more as a companion than a caregiver, and they could go on outings together. The Longs want to develop people in Alyssa’s life that are trying to better her and find out what interests her, instead of people who are only in the job for a short time while they find something better. Alyssa loves going out and watching people because it makes her feel less isolated. On top of the joy community outings bring to Alyssa, these outings are also important to her parents because it is the only time she has any independence from her parents. Considering this, a consistent caregiver is vital for Alyssa so she can grow and experience life-like a typical adult without constantly relying on her parents.
When asked what Carmen wants the public to know regarding individuals like Alyssa, she had these eye-opening words to say. “Do not be afraid to talk with individuals with disabilities and ask about them. Follow little kids’ example and just ask. Today adults feel it is rude to ask about Alyssa, and it is easier to look past her. It hurts my heart, because Alyssa is a person, she recognizes other people in the world and when you look past her because you are trying to not see her, in fear of being rude, that is more hurtful. She is different, and it is ok to say that. People don’t realize that adults with disabilities deserve to have an adult life just like everybody else.”