ANNAPOLIS, Md. — Parents of children with disabilities are calling on the governor to pause a policy being implemented at the Maryland Department of Health.
They say it makes it tougher for parents to care for their children with disabilities.
"It takes so much effort and so many multiple medical appointments like just this year trying to get this chair for Emily, they tried to deny critical parts of this chair," said Adam Wyndham, the primary caretaker for his daughter Emily.
She lives with Rett syndrome, needs a wheelchair to get around and near constant care.
"Last year she actually experienced a code blue event while in the hospital trying to figure out what was going wrong with her where her heart and her brain activity flat lined," said Wyndham. "So her already extraordinary care became more intensive."
Wyndham says since he is Emily's caretaker, he gets money from the state but that's set to change.
Now, if a family member is on the staff of caretakers they can't also be the designated representative for the person.
The designated representative handles the person's budget and makes decisions.
"So then who are we left choosing to be the designated representative," said Wyndham.
He says there are also issues with the program to get funding for essential goods and services.
"That service has actually been difficult to use. I personally haven't used it for my daughter in past years," said Wyndham.
Adam wasn't the only parent frustrated with these changes.
More than a dozen lined up to speak with us.
"They have completely stripped her ability to live her life, the basics to get to places and the ability to pay for things all the things she needs extra help with," said Ginger Houston-Ludlam.
"I love being partnered with a DDA and I really miss that very much," Carmen Houston-Ludlam.
Some parents are upset their longtime caretakers who have worked with their children for years could be lost.
Saying the new policy wants to lower their pay.
"You can't take someone whose been given a certain amount of money for hour for for our five years and then say you're going to drop their salary ten dollars an hour," said Jean Weller.
Others have trouble getting on the plan.
"It's already been difficult to us who have agreed to work with us for jack and now they're lowering costs," said Richard Pippenger.
Mothers and fathers stressed about what this means when the policy officially changes next week.
"I'm freaking out," said Shari Silverman.
"We need to stop trying to find ways to add more red tape and accuse parents of wasting money when quite frankly I'm saving the state money," said Ashley Johnson.
Parents and caretakers are upset about the lack of notice.
The policy was announced two weeks before the changes take effect.
They're also angered their community couldn't provide input.
We reached out to the Maryland Department of Health who said, "DDA consolidated and clarified policies to improve quality and accessibility for self-directed services based on constituent and advocate feedback."
Adding that, "Changes will not only help reduce processing delays, but ensure that taxpayer-funded services are delivered in accordance with state and federal regulations."
As for family members being able to be decision makers and employed caretakers, the department says that policy has always been that way.
Adding that the administration is running training programs for families to be able to navigate these changes.
The group is still calling on the Governor to pause the policy change.
