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Special Needs Families and the Caregivers they Need

11/14/2022

8 Comments

 
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​Special needs families celebrate the joys of parenthood with many triumphant milestones and memorable experiences. We also get to witness the beauty in acts of kindness and selflessness in how people, unrelated to our family, behave with our special needs children.  We get to see these acts of kindness in teachers, therapists and other service providers. We’ll also see it in caregivers who provide our family respite services and full time support.  However, finding caregivers for special needs families presents many challenges that range from identifying caregivers to finding one who is a good match for special needs families to keeping a caregiver long-term. 
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​Identifying quality caregivers has pretty much been a timeless issue for many special needs families. Over the past decade, our family has been able to find one quality caregiver annually for the past few years and this was pre-COVID. Sadly, the caregivers we hired would remain for just a few months and move on due to circumstances that have involved finance, family or health issues.  We are now living in unique times as we learn how to deal with post-pandemic protocols, and the impact it has had on retail and service industries is profoundly devastating. Caregivers have become apprehensive about working in direct contact with clients and others have opted to pursue work at home opportunities. Who can blame them? The pay caregivers are offered historically isn't anything to dissuade their thoughts on career changes and over the years, caregivers have told me it felt like a thankless job. 
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On the flip side, many caregivers have also told me that they couldn’t imagine doing any other type of work. Inspired by their parents, siblings, family members or friends with disabilities, they saw and felt the rewards of helping someone in need. Many parents who worked with caregivers were inspired by how their family situation was helped and pursued the career for themselves. The passion for helping those in need of a friend, companion, personal care assistant and beyond offers a sense of gratification that money simply cannot match.  However, make no mistake – Caregivers should be better compensated.  The average compensation for a caregiver nationwide is anywhere from $9.00 to $15.00 an hour. It’s no wonder we’re struggling with a shortage of caregiving applicants when McDonalds is starting new employees with $16.00 an hour.
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 Poor compensation and benefits packages leads to providers feeling devalued and not respected. These emotions often lead to resentment and overall unhappiness. An employee who feels this way is non-motivated and less likely to do a good job. This may result in the client being neglected or mistreated. 

Employees who feel appreciated, well compensated with the promise of greater opportunities in the work place are more likely to do a good job and go above and beyond the call of duty. Caregivers need to feel valued, appreciated, well-compensated and offered continuous training with the prospect of doing greater things. For instance, a caregiver who does a superb job can be groomed to become a supervisor who trains new caregivers and develops daily activity plans for clients. A well developed caregiving pay package could improve the quality of life of the caregiver, the client and the overall family. 
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My son Richie is this phenomenal young man who struggles to communicate effectively with others. This often causes him to feel frustrated and results in behavioral issues. Some of these behaviors include self-injury (self-slapping), aggression towards others, or destruction of property (holes in walls, throwing furniture, etc.). These behaviors often cause before and after school centers or other programs the option to refuse or discontinue program services for people like Richie. When appropriate care is unavailable, this leaves special needs parents like myself with one of two options – quit our jobs (like I did) and stay home to care for our loved ones, or consider residential placement, also like I did when working from home no longer supplemented the income our family needed. While there is no shame in choosing to do either of these things, it’s a difficult situation when it’s forced upon you and your family.  No special needs family should ever be forced to make this decision. 
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Caregivers are essential to all families, not just families of children and individuals with disabilities. Families who are caring for their elderly parents, grandparents, and other family members who have issues with mobility and conditions that requires daily attention and care. At some point in our lives, we all may look to outsourcing care for loved ones. The goal is always the same, we want our loved ones safe, loved, cared for with their dignity in mind, happy, and close to us.  
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Who will care for my daughter tomorrow?
Caregivers have one of the most important and noble roles in our society and yet they are not well compensated for the incredibly challenging work they do. Luckily, agencies are starting to realize just how difficult it is to fill caregiving positions and have started offering better compensation packages. Recently, in June of this year, the state of Florida passed the Freedom First Budget bill which increased Medicaid providers minimum wage to $15 an hour. It’s a great start – but the pot is not quite yet sweet enough. There is still a shortage of care providers in our state. The caregiving industry still needs agencies to have many caregiving people to back up vacation time, sick days, and doctor appointments or other emergencies. It’s a job like anyone else’s and they should have adequate coverage for handling these things. What good is having an excellent caregiver working with your family if you have to experience anxiety every time they call off? 
My hope would be that state and local agencies collaborate to create better compensation and training packages that appeal to those with caregiving as a career goal.  I’m a firm believer in reviewing existing resources for solving an issue.  For example, why not offer college students who are interested in the medical and health industry the opportunity to work as a caregiver in exchange for college credits? 
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The need for caregivers in the special needs community is growing rapidly. This bi-partisan issue should bring us together to find a solution for ending the sad shortage of these wonderful providers. Quality caregivers are crucial to the improved quality of lives of our children and loved ones. Special needs children and adults thrive in their natural environments and caregivers can offer special needs children and adults the opportunity to live happy and fruitful lives at home with their families or independently in their own place with the right supports. 

Sincerely, Christine SensoryFriends

8 Comments
Nadalie link
12/7/2022 12:30:28 pm

I truly believe that the government should provide better quality training and compensation for caregivers. Not a lot of people have realized the importance of caregivers to the society.

Reply
Christine Goulbourne link
12/8/2022 07:37:55 pm

I agree with you, Nadalie. Thank you for stopping by and sharing your thoughts.

Reply
Gennifer Rose link
12/7/2022 03:01:45 pm

I have two kids and I can imagine how difficult the struggle would be to find loving and responsible caregivers for special needs families. Wishing you all the best!

Reply
Christine Goulbourne link
12/8/2022 07:51:37 pm

Thank you for your kind words Gennifer. It is always difficult to find quality care for our most vulnerable.

Reply
Tisha
12/7/2022 05:57:56 pm

Caregivers are definitely important and in demand. We need more of them on hand

Reply
Christine Goulbourne link
12/8/2022 07:53:34 pm

Yes, we do need more people who are compassionate and ready to work with families and their children and adults with special needs.

Reply
Sharon link
12/7/2022 06:03:24 pm

This is a great comprehensive guide on not only how to hire the best care, but how to make sure they are as well taken care of as your loved one.

Reply
Christine Goulbourne link
12/8/2022 07:57:10 pm

Thank you for visiting and sharing your thoughts!

Reply

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    Author: Christine Goulbourne
    christine@sensoryfriends.com 

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