Public Comment: DD FIS waiver

Due to unclear DMAS communication & conflicting information from Service Facilitators and Case Workers, I am writing you today with a heavy heart, pleading that the live-in/parent for disabled adults receiving the Medicaid Waiver continue to be paid as care givers through the Consumer Direct option.

I am the legal guardian, care giver & also parent of a severely disabled young adult.  As legal guardian I am also her voice.

My daughter is non-verbal, non- ambulatory, needs full assistance on everything 24/7 for her eating, bathing, hygiene, medical, transfers, safety, therapies, engagement activities & transportation just to name a few.  She waited over 15 years to get the Family & Individual Supports waiver, which she has had only a short time.  The irony here is that the Waiver is called "Family & Individual Supports, yet 'Family' seems to be what is being questioned by DMAS.

She has Consumer Directed (CD) care.  Why go this route vs agency?  For example, one person an agency sent was elderly & told us "I usually don't do anything but sit with the person" that obviously wasn't going to work.  Also, many Personal Care Attendants (PCA's) receive a certificate for training, unfortunately, they also have little to no experience working with Cognitively & Physically challenged Special Needs/Severely Disabled adults.  The smiling grandma one sees on TV needing home care is certainly not the life we lead.

So, we chose the route of CD by finding our own people...it has been difficult and took a long time to find anyone to provide quality attendant & respite care.  A few examples we discovered many PCA's smoke, our household has allergies/asthma; some don't like dogs, we have a dog; some think we live far away, and many have questionable backgrounds. We had a few that were here for short durations, & currently we have some that are only able to do a couple days a month, or a few hours a week as they both have other jobs.  It's obvious that still leaves a lot of hours & days that my adult special needs daughter depends on me to care for her.

We continue to look for more help, but qualified people are not rushing to a job that pays only $12.70/hr to start at 5:45 a.m., administer medications via a feeding tube, do basic stretching exercises, get wet standing in a roll in shower to bathe her, change adult diapers, lift a small adult into various DME's (bed, stander, gait trainer, wheel chair, etc.), to sometimes be pinched & hair pulled, listen to screaming when she is upset, monitor for seizures, choking, and falls, provide wheelchair transportation to events & other engagements, & these are just some of the highlights of a typical day.  This is a 24/7/365- day commitment.

I am baffled why live-ins are suddenly the enemy of DMAS, when we are the direct care providers filling the gap keeping our disabled family members out of institutional care.  Or did I miss the news of a sudden influx of highly trained PCA's coming to town, ready to work these crazy schedules?

If this is about budget, then reassess from the top down where cuts could & should be made.  If these changes are about some type of fraud, then go after those that abuse the system.  Don't make these changes that effect the direct care to the severely disabled who are being cared for by those they just happen to live with, or are related to. 

These proposed changes also violate & silence the voice of the disabled adult waiver recipient on their right of whom they choose to provide the most personal of care....wasn't that the point of the waiver?

The Consumer is the one that is ultimately being negatively affected by this DMAS decision.  Parents & spouses for special needs/disabled adults living in their homes should be given a badge of honor for all they do, not punished by DMAS, simply due to their family living arrangements.

Please reconsider these proposed changes to Consumer Direct Care, and keep 'Family' in the Family & Individual Support Waivers.

Thank you.