State Sen. Nancy Rodriguez, D-Santa Fe, calls it “mind-boggling.”
Rep. Elizabeth Thomson, D-Albuquerque, goes even further, calling the situation “unconscionable.”
They’re referring to the state’s Developmental Disabilities Waiver, or DD Waiver, a state-run program that helps people with developmental disabilities participate as active members of the community. It’s a good program that provides much-needed services including therapy, help with employment, respite services to give families a break, nursing supports, physical therapy, speech language pathology, supported living, nutritional counseling, and initial therapy and behavior support consultation assessments.
The waiver program began in 1984 as a way to help people with intellectual and developmental disabilities by serving them in the community rather than in institutions. It’s dubbed a waiver because the federal government, for 14 states, has waived the requirement to use a nursing home or other institutional setting to provide services.
About 4,600 people are currently enrolled in the waiver program. The problem is there are about 4,500 others on a waiting list for the services – and some have been waiting a dozen years or more for their turn. People like Cynthia Byrne, a 20-year-old woman with autism who has been waiting in line for services for 12 years.
“It’s very frustrating,” her mother, Simone Byrne, told the Journal. “You think you’re going to get all this stuff, and it turns out you’re just on this list.”
Rodriguez and Thomson are right to call the situation mind-boggling and unconscionable, and lawmakers and the next governor owe it to the vulnerable population this program serves to fix this broken system once and for all.
Part of the solution lies in investing more money into the program to help more people with developmental disabilities get the services they need, and lawmakers should definitely make that a priority when the legislative session begins in January. But under the current model, eliminating the backlog would cost more than $131 million a year by one estimate.
The reality is that with all of the competing needs the state has – underfunded pensions, a court ruling mandating more money for schools, out-of-control crime, growing Medicaid rolls, just to name a few – there simply isn’t enough money to fund all DD Waiver services for all those with needs.
Which means it’s time for state officials to begin in earnest the politically unpopular re-assessment of who gets what services through the program, and follow that up with a revamped system that ensures more folks get some much-needed services rather than a fraction getting all services. And yes, that means reducing the level of services already being provided to some folks currently being served.
It won’t be easy to pull off, and it’s bound to be controversial.
But the current system isn’t working at all for more than 4,000 New Mexicans.
In fact, the problem is getting worse year by year. State records show the waiting list grew 27 percent over a recent four-year period. Per-client costs are growing, and the percentage of people diagnosed with autism and Down syndrome is also climbing, according to analysts with the Legislative Finance Committee who studied the issue.
Those analysts point out that states with lower waiver costs appear to offer fewer or more limited services than New Mexico.
“Other states are more cost-effective in delivering services for individuals with developmental disabilities,” LFC analysts said in a report this summer.
New Mexico needs to look to those other states for guidance on how to operate its own DD Waiver program more effectively and efficiently.
The LFC report recommends slowly ramping up funding over time, with the goal of reducing the waiting list by 25 percent to 50 percent over a five-year period, which would cost the state $33 million to $65 million a year. But it also recommends the state take steps to control costs. Those are good recommendations lawmakers would be wise to adopt, and adopt simultaneously, considering New Mexico’s boom-and-bust state revenue stream.
The time to act is now.
Maureen Sanders, a civil-rights attorney who advocates for people with developmental disabilities, said the waiting list may cost New Mexico more in the long run as individuals deteriorate without getting the help they need.
Some will argue the state is going to have more than $1.2 billion in new money and should just write a check to eliminate the backlog now. The problem with that approach is it will take recurring dollars to keep offering those services year after year, and New Mexico’s revenue stream is notoriously volatile. If trimming services seems offensive, how about having to pull back all those expanded services and bump people off the waiver when state revenues drop?
The only way to truly fix this problem is to strike a balance between allocating more money for the program AND making it more efficient.
Reducing the level of services to people already in the program won’t be popular. But it’s simply not fair that some families are having to wait 12 years for their loved ones to tap into services.
This editorial first appeared in the Albuquerque Journal. It was written by members of the editorial board and is unsigned as it represents the opinion of the newspaper rather than the writers.