Thousands of people with developmental disabilities in New Mexico have been waiting to receive the full spectrum of services available through a government program, some for more than 10 years. The Tatz family is inching towards that benchmark, as they and their kids grow older.
“I had back surgery," Lesly Tatz announced. Lesly's mom, Jill Tatz, explained, "She has had medical issues, and had open heart surgery at 18 months.” Her daughter has had numerous surgeries.
Lesly and Jill have been through a lot together, but they’re like “this” – Lesly demonstrated with tightly crossed fingers.
Lesly, who's 32, was born with multiple physical and cognitive disabilities and on this day she just got home from a field trip with Adelante - a non-profit center where she receives supervision during the day while her parents are at work.
Medicaid pays for Adelante and Lesly’s healthcare, but she won’t get any additional government benefits until she is moved off the waiting list and into the Developmental Disabilities - or DD - Waiver Program. Then she’ll be eligible to receive things like vocational and speech therapy, counseling, and coaching to help get and keep a part-time job.
Lesly and her 18-year-old brother Noah, who also has disabilities, are lucky. Their mom Jill has a Masters degree in special education. She makes sure Lesly and Noah get to doctor’s appointments, attend school and daycare, and that they are active in social clubs and Special Olympics.
People with developmental disabilities often need help in their daily lives, help that is organized by a case manager for people in the DD Waiver Program. Jill Tatz says people with disabilities who have no case manager are often parked in front of the television. She’s determined not to do this to Lesly and Noah.
“I do all the case management," Jill explained, "and it’s hard, it’s really really hard. Because it’s not only community services that we need to access, it’s vocational services, it’s educational services and it’s medical services.”
The Developmental Disabilities Waiver Program was created by Congress in 1981 to transfer people with disabilities out of public institutions and back into the community with government support. States request a waiver from the federal government in order to have Medicaid pay for services not usually paid for under its rules.
New Mexico’s DD Waiver Program has a budget about $326-million, just under three quarters of which comes from a federal match. This money provides services for the 4,700 people who are in the program. Some families get paid to take care of their loved ones. The program also pays for people with disabilities to live in small group homes.
Meanwhile, there are over 6,000 people on the waiting list. The Tatzes have been waiting for more than nine years. Jill says she’s frustrated with the lack of state funding.
“When I hear what a rich state we are, with natural resources and oil and gas money is there, why aren’t we using it for these populations that need it the most?" Tatz asked. "We’re really doing a disservice to our children, to other adults with disabilities in the community if we’re not funding the services that they’re really entitled to.”
Even though the Tatzes would be considered middle-class – he’s a dentist and she teaches at Central New Mexico Community College – they cannot afford the cost of placing both Lesly and Noah in independent living.
State officials say the DD waiver waiting list is so long because there just isn’t enough money. Cathy Stevenson runs the New Mexico Developmental Disabilities Supports Division. She points out that her agency has reduced the waiting list by 800 over the last several years and the department plans to reduce it by several hundred more. She says the waiting list is sometimes misunderstood.
“When we say waiting, it doesn’t mean they’re waiting with nothing," Stevenson said. "Many of these are children who are in school. There are also people who are receiving personal care option services through our state Medicaid program, so they’re getting their personal support that way.”
Those personal support services include help with bathing, shopping, or grooming – the state spent $124-million dollars on these alone between 2006 and 2008. But the benefits in the DD Waiver Program include a much broader range of services and therapies that people on the waiting list are eligible for, and they cost an average of more than $71-thousand per person.
Disability rights advocates are disappointed lawmakers failed to fully fund the DD waiver program during this year’s legislative session.
“I think, frankly that this bill was held up a little bit because some people were concerned that we would be bringing a lot of family members to the capitol, that there’d be a lot of pressure on legislators to put more money in. And I think some people didn’t want to hear that,” Jackson said.
So as they wait, the Tatz family often relies on the kindness of friends to help out.
“I think when you think about having children," Jill said, "you think you’re going to do your best job to bring them up, and then they’re going to be able to be somewhat independent and live on their own. That’s not the case here.”
Last year a state task force found that the state would need to add more than $83-million over the next several years to cut the waiting time from 10 years down to three.
Correction: We originally reported in this story that $83-million was needed each year for three years in order to shorten the waiting time from 10 years to 3 years. We also incorrectly reported that Jim Jackson worked with The Arc of New Mexico. We apologize for the errors and strive for accuracy in our reporting.