My brother has developmental disabilities.
Or, my sister, aunt, uncle, cousin “is disabled”. I hear this a lot when I’m out doing daily living things when people hear what I do for a living. After I point out more “People First Language” as nicely as I can, we start to chat about services in Utah, and how to get services from DSPD or Division of Services for People with Disabilities. It’s a long and arduous task unfortunately.
And a lot of times, the care of a person defaults to a sibling. I have heard several times that parents don’t want their son or daughter going to a “group home” when the time comes, a brother or sister will take care of them. But when I speak to the brother or sister, this is not the intention. They have their own lives and own families. They are willing to advocate, but not sure how, and are unsure how that sibling is going to affect their lives. But sometimes there is a brother or sister that is so committed to their sibling that they will take over where the parents cannot, and accept that responsibility.
Number 1- The siblings of people with disabilities are pretty amazing people. In short, YOU ARE AWESOME! They are always the first staff by default when doing Self Administered Services, and one of the first friends that someone with a disability will have. I am lucky that on my caseload, there are several siblings that are there for their brother or sister with disabilities. I am going to focus on them and their world and how to help. If you are the brother or sister of someone with a disability, this next bit is for you. And you are pretty awesome, too.
Number 2- All siblings of people with disabilities need to know that they are supported, and don’t need to feel guilty for using paid staff.
Number 3- It’s alright to ask for help. That’s what people like me are here for. Don’t feel guilty for wanting someone else to help you with providing care. It does get exhausting, and yes, you need a break. It’s okay for you to have your own life. Take time for you, however that looks. If it is just taking an hour to go to the gym, taking a weekend away, or scheduling some time during the week for you to take a class or visit with friends. It’s really important for your well being.
Number 4- You grew up differently than most people out there, and that is okay. In most cases, you have a better idea of patience and compassion. You were your sibling’s first friend, confidant, protector, and teacher.
Number 5- Communication is Key! Even if you have been away for a while and are just getting back into either providing care or just helping with advocacy, your sibling most likely has a team helping them if they have government waivered disability services. Communicate with us. We love that and it will give you piece of mind.
Number 6- You are not alone. Give yourself time to learn what is working and not working for your sibling. You don’t have to jump in with both feet and try to set everything up if they have services. It will feel as if you are just chasing your tail, and worst of all, you will get the run around from several agencies that are there to help you. It can get exhausting. If your sibling has disability services in Utah, we are here to help you and eliminate some of that panicked feeling that you have. This is probably the most important section, because you have a team of really compassionate people who care and have made this their life’s work to be a support to you too!
Here’s Number 7, which is a bonus. Don’t forget to laugh and enjoy life.
With that said, there is a lot of knowledge we have as direct care providers, advocates, support coordinators, and support brokers. And we want to share it with you. Sometimes when you are out hunting for information, you can cause more problems with services than helping with services.
I had one case where a woman tried to place her sister with a disability in a nursing home and try to change the waiver without talking to me, the aging system didn’t understand, opened her up for their waiver, and effectively stopped the disabilities waiver. When DSPD found out, luckily the disabilities waiver was not terminated, because the nursing home was not able to provide services for a woman with developmental disabilities. She eventually did go to a program that would accept the federal Medicaid funding for people with disabilities. So please realize you have a whole team to help you.
*If your sibling is not on services with DSPD or you need waiting list guidance, please inquire with us at Intersect Services. We have a lot of experience with Disability Services and have quite a passion for it. And we are happy to help. I will be writing a blog about this soon!
If you are the parent of a child with disabilities, this all still applies. Just remember that your other kids need support as well. Make sure to thank them for helping, putting off their activities, take the time to listen, give them praise for the good things they are doing, take time to spend just with them. And it is okay for you to have a break too.
I know it seems really simplistic. But sometimes in simplicity there is form, function, and beauty.
Carry on, because you are an amazing and beautiful person!