Dr. Rebekah Gee

Dr. Rebekah Gee

On Feb. 9, Rebecca Ellis received a letter in the mail that she'd waited more than 10 years to see. Her 13-year-old son Jackson, who has developmental delays stemming from autism, had finally been approved for a Medicaid waiver allowing him to receive additional support from a personal care worker provided by the state.

"When I got the letter out of the mailbox, I got as far as my garage before I just kneeled down on the floor and cried," Ellis said in an interview. "For so long I was thinking, 'Would it ever come?'" 

Ellis is one of the more than 10,000 families who have languished on a much-maligned waiting list because they have a family member with developmental disabilities and needed a Medicaid waiver to obtain home-based medical support and personal care assistance.

On Monday, Secretary of Health Dr. Rebekah Gee announced the state had finally done away with the waiting list and ensured that every eligible person who was in line asking for help from the state had received some form of assistance. 

"At one point we had 16,000 families on our wait list," Gee said. "We wanted to come up with something that was better than that. So we said, 'Let's fundamentally transform how we have families access disability services. Let's get rid of the wait list." 

For decades, people with developmental disabilities have received Medicaid waivers for at-home care on a first-come, first-served basis. Thousands of people applied for the state's most expensive Medicaid waiver, called the New Opportunities Waiver, which typically costs the state $52,000 per family. And because of budget constraints and caps on the NOW program, the state has had to leave many of those families in limbo. People commonly sat on the wait list for 10 years. State officials identified at least one person who had been waiting for state services since 2004.

The new approach included screening each of the people on the list and tailoring assistance to their individual needs. This allowed the state to give priority to the individuals with the most urgent issues. 

Department officials also learned that many of the families needed less-demanding levels of care than required by the NOW program, and they were assigned less expensive waivers. The three other types of Medicaid waivers for people with developmental disabilities are significantly less expensive to the state, ranging from $7,000 to $28,000 per person.

"The shift to a tiered waiver system will allow Louisiana to meet the needs of more people who require the greatest level of services or supports and, at the same time, be more efficient with state dollars," said Mark Thomas, LDH deputy secretary.

Thomas said the assistance provided to the families takes the form of home-and-community based workers, who are often assigned a few hours per day to help clients with their daily activities including getting dressed, cooking, going to the grocery story, attending church or medical appointments and finding employment. In some cases, people screened were also outfitted with medical equipment.

In total, the department spent about $15.6 million in state general fund dollars, allocated through Medicaid waivers, and leveraged another $28 million in federal matches to meet the needs of the people on the waiting list. The changes were also made possible, in part, because the Legislature recently approved funding more than 600 new Medicaid waiver spots.  

Prior to the change, the officials estimated it would have cost $832 million in state and federal dollars to address all the individuals on the waiting list. 

LDH still has a waiting list of about 28,000 elderly or physically disabled people who are awaiting similar home-and community-based services. However, Gee said the department has hired more than 45 people who are working to reduce that wait list as well, with a priority on moving people with mental illnesses out of nursing homes and into more suitable surroundings. 

Ellis said the waiver for her son will dramatically improve his developmental progress. Because Ellis works full time, Jackson has had limited opportunities to interact with his community outside of the house. He goes to therapy twice a day, but has needed to practice skills in a regular social settings, such as picking out groceries from a list and discerning the difference between the men's and women's restrooms, Ellis said. 

"Now I have someone who five days a week spends several hours with him between morning and afternoon therapy," Ellis said. "It's opened up a whole new realm of possibility of things he can do. It may not seem significant to other people, but we've been working on his daily living skills and he had to practice those in a real environment." 

Ellis, who is divorced from Jackson's father, said the timing was also crucial, because Jackson had just become too old to continue at the summer camp he previously attended, and she didn't have a plan for his supervision during the summer months when he was off from school and she was working. 

For the past several years, advocates for people with developmental disabilities, have flocked the State Capitol during legislative sessions, urging the Legislature to provide additional spots for the high-demand Medicaid waivers or begging them not to make cuts to the services that allow them to take care of their loved ones who often have complex and expensive medical needs.

Ashley McReynolds, a long-time advocate whose own son is on the Children's Choice Medicaid waiver, said it's heartening to see the results play out in real life for families who have waited years for help. 

"To finally be finished with this is awesome," she said. "But what's really amazing is having my friends send me pictures of their waiver offers they're receiving in the mail every day. I see a new one every day."

Follow Rebekah Allen on Twitter, @rebekahallen.