How much control a state agency should have over medical decisions for disabled patients who are unable to make decisions for themselves is at the heart of a policy which has been approved by the state's disabilities board.
But advocates and at least one commissioner question the legality behind the directive, approved Thursday by the state Department of Disabilities and Special Needs Commission.
At issue is the agency's policy about what to do when a patient is unable to consent and a medical decision needs to be made.
DDSN oversees the care of thousands of those with intellectual disabilities, autism, brain and spinal cord injuries through a network of regional centers it operates and county disabilities boards and private providers.
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Last year, lawmakers amending the Adult Health Care Consent Act accidentally deleted the line that dealt with DDSN and where it should fall in priority of decision making for a disabled person unable to consent.
Rep. Murrell Smith, a Sumter Republican, drafted a bill this year at DDSN's request to place the agency third in priority, behind legal guardians and attorneys but ahead of family. The bill is pending.
That sparked outcries from some advocates, and the DDSN Commission directed staff to request that lawmakers place the agency behind families in priority.
Then staff drafted what appeared to be a hybrid policy, which would keep the agency third in priority but not use that authority unless certain family members could not be found.
On Thursday, the commission voted to approve the new policy, amended to include all family members, not just the certain ones initially spelled out in the proposal.
Commissioner Vicki Thompson of Seneca voted against the policy.
"I am not persuaded that this administrative directive has the legal basis," she told the commission, asking that her reasons be recorded in the minutes.
She said Friday that because lawmakers had deleted the basis for the policy last year, she is not convinced there is a legal foundation until lawmakers act again.
"It's a mess," she said. "What aggravates me the most about it is we had the opportunity to correct it in March. And instead of correcting it we made it worse."
Debra McPherson agrees. The former DDSN commissioner and advocate has been perhaps the most vocal opponent of the new policy.
She said the commission was substituting DDSN for a line that had been used for the state Department of Social Services. Without an amended law, she argues the agency has no authority to be making medical decisions in cases in which the disabled are unable to consent.
"They have been out of compliance, as far as I'm concerned, since 2016," she said. "And they hadn't revised that directive since 2014."
The agency is claiming its authority, she said, under the rights of clients with intellectual disabilities law. The problem with that, she said, is that while it gives the agency the authority, it says DDSN "may" make decisions and references the Adult Health Care Consent Act, line 8, which previously listed DDSN but now lists grandparents.
If the agency already had the authority to make such decisions, she asked, then why did it ask Smith to introduce a bill to insert DDSN back in the law?
She said she believes the new directive is a "violation of the rights of families. I don't agree with them."
Vice Chairman Gary Lemel asked that other family members be added to the list of those who should be contacted before a decision is left up to DDSN.
"Right now the law says we may exercise it much earlier, we may," he told commissioners. "I think the intent of what we (previously) passed is while we may exercise it, we are choosing to defer and not exercise that power until further down the line."
In other words, the agency is placing itself at No. 3 in priority but has agreed in practice to try and reach any family member first.
"What the commission asked us to do is be sure that in our directive, we're going even further than the statute and saying we're going to defer to any family member first," said Beverly Buscemi, DDSN executive director. "Only when a family member is not available and not present. will a DDSN agent be available to make that decision."