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Board of Medical Assistance Services
 
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9/24/26  1:32 pm
Commenter: Anonymous

Strong opposition to service facilitator phase out, and the soft 55 hour cap
 

I don't even know where to start on this...there are so many things that are wrong with it! First of all, service facilitators are the lifeline for families trying to navigate waivers, and needs for their disabled family members. All the paperwork, and changes happening continuously, are overwhelming to a parent who is already dealing with so much on a daily basis, advocating, taking care of, providing all the supports needed to care for a disabled child, and most of the time, profound needs! We were on the DD waiver waitlist for about 5 years. We finally were granted a slot, and now we are facing this change that could profoundly affect our family. The alternative for just allowing parents to provide care for their adult children in their own home environment, would cost so much more! A group home would have to pay for 24/7 care, and at much higher rates of pay than it costs to allow a parent, who knows and understands the needs of their own child better than anyone. My daughter is 27 years old. She has Down syndrome, Autism, OCD, PMDD, behavioral issues, thyroid issues, elopement issues, has to have help with toileting, bathing, dressing, eating, medication administration, meal preparation, transportation to appointments, and much much more!! Too many things to mention that come up on a daily basis. Caregiving is not a "one size fits all" thing! Every individual with a disability has different needs, and some, life my daughter, are profoud.  I clock in and out daily for the allotted hours we have been given,  but in reality, I am on the clock 24 hours a day! As she has gotten older, her needs are getting to be more and more. I get up with  her in the night multiple times, she wonders, she has to have constant supervision, and all day I am taking care of her needs. This waiver system has been a life saver for our family! I was  a Teller Supervisor at a local bank. I had to leave my career, and come home to care for my daughter. It was a big financial blow. Then I learned about the waiver program. She was a Priority 1 for 5 years on the waitlist. It seems since we got the waiver, things keep changing, and it never seems to be for the better good of the individual getting the services. The people who make these decisions need to go spend the day, and a night watching what all goes into the care of a profoundly disabled individual. This is much more mentally, physically, and emotionally taxing than my public job ever was! I love my child, I will always advocate for her to have the best care possible! She is very attached to me, and doesn't do well with other people taking care of her. The waiver has provided for us to be able to keep her happy, and manage everything at home. Please don't cap the hours, please don't remove the service facilitators from doing what they have been doing!! It is hard enough to navigate this life with their support, and I don't even want to imagine what it would be like without them! Again, every person with a disability has different needs, but most of them are very needy, and need the hours, and the support they get. Please leave things as they are, and don't make changes that will make things hard on the people who are already doing the best they can to navigate so many daily uncertainties! 

CommentID: 241748