When my cousin came over just before Christmas Eve, small talk brought up her new job working for a wealthy family member who became paralyzed in a diving accident. My cousin has to help him get dressed, eat, accompany him to the gym, and do everything else that you may have to do with your friend or family member with physical or neurological disabilities. We got around to talking about payment, and she explained she's taking a cut in pay because he's a relative.
It can be a hard question--what should you pay a caretaker who helps you with differently-abled family? How much more does it cost? Should it cost more? Many children with Down's syndrome have happier demeanors and easier "obedience ethic" than "normal" children do. On the other hand, spending a day with a stimming, high-energy autistic child has turned many a saintly caregiver into a rage-class sinner. Here are some considerations for paying a caregiver for a differently-abled family member.
1. Government aid
Families with mentally-affected family members sometimes receive government social security subsidies for care. Depending on your needs, the state you reside in, and other factors, once they've reached eighteen years of age the government may pay anywhere around $695 a month to supplement their care. This definitely factors in to any decisions the rest of us make about their care in the future. A caregiver in Hawaii can receive as much as $14.64 an hour from the government to help with home care for a young adult with cerebral palsy; you may want to pay a comparable or competitive rate even if you don't receive government money, just to attract good caregivers.
Lower-income families not yet eligible for government aid and unable to pay government rates to their caregivers don't have to fear getting edged out of the home-care market by Uncle Sam; you can still attract good help for less. If you live near a college or university, you may take advantage of psychology or pre-med students looking for volunteer credit. "Miriam" posted an ad in the local student volunteer center asking for help with her child with autism. She trained volunteers to use the Sunshine program to play with and care for her son, held meetings every Sunday, and scheduled each volunteer for a few hours every week. The simple math reveals enough: twenty volunteers at two hours each every week equals forty hours of care, and even ten or fifteen volunteers can fill up a sizable chunk of your in-home needs.
If you don't live near a large student population, an e-mail out to your local church may even get you a long-term caregiver for ten or so hours each week who's just looking for room and board as payment. Don't feel overwhelmed, and don't give up your search--people can help you.
This leads to the issue of expertise. It's often fairly easy to train caregivers for basic help, but if you want higher quality intensive therapy you will certainly have to pay more. An ABA therapist with a master's costs $100 an hour, but you can get good therapists working on their bachelor's for around $9.00. This is actually a criminally low rate--ABA therapists often receive much more training than non-therapeutic caregivers have, and non-therapeutic caregivers in Virginia can go for as much as $20 an hour. However, it can be tough to get even 30 hours a week of in-home therapy, and having therapists come in and out of your house may require more of your presence at home. You may need to mix and match in-home therapy and other in-home care. Many care.com special needs' experienced caregivers work for $10-$15 an hour.
Whatever your cost evaluations for in-home care, make sure you remain up-front with your caregiver about your health needs and pocketbook. When you post a special needs opening on care.com, make sure to list all the important needs and details so that you can get the right caregiver for your family. Don't be afraid to ask for free help from your church or community center, and remember that the rest of your family has needs also. Join a support group for families with differently-abled members for resources; many of us understand and sympathize with you. It's common for families with special needs to feel judged by their local community or co-workers, so finding a forum of similar families not only helps families share resources--it also allows you readier access to info about non-judgmental, experienced caregivers and friends. It's okay to ask for help if you have to stay home more while in-between caregivers or if you can't find a caregiver who meets your needs: that doesn't make you any less an educated or empowered person. Families with special needs face a lot of pressures from all different directions, and you have to feel comfortable with your own decisions to do the best for YOUR family, not some imagined ideal.
Blessings, and peace.