We have become a very impatient society. Our tolerance for waiting is in decline. Car horns and cell phones replace our ability to defer the gratifications of speed.
Our temperatures rise with inefficient line checkers and interstate gridlocks. We wait and we wait, grinding our teeth and drumming our dashboards. There must be a special place in heaven for those who — whatever the circumstance — can take a breath and weather the daily storms.
For certain groups, however, there is little salve for their wait. Their gridlock cannot be solved with a chill pill, deep breath or meditation seminar.
I’m referring to the inordinate patience of 14,000 North Carolinians who sit on the Registry of Unmet Needs, people of all ages and socio-economic groups who have intellectual and/or developmental disabilities. Though qualified for assistance, they are put in a holding pattern for the Medicaid Innovations Waiver. In Forsyth County, that number in wait is 755.
Most scenarios demanding patience find breaks in the pattern — movement, hope. Forsyth County has not had any movement in four years. More than half of the 755 have waited a decade or more. Stuck. This is unconscionable.
For the young on this registry, the most crucial developmental years are passing them by. The evidence for early intervention is powerful. The wait, saddening.
For the adults, years of supported employment and community engagement vanish. Costly for everyone.
For the families that must defer careers or employment to provide care, the socio-economic stress multiplies each year. Heartbreaking.
For the paid care provider, if one is available, working at or near minimum wage, there is no career path. For many the work is temporary. If they are single parents or have debts of any kind, a sickness, school cancellation or auto repair can disrupt an entire family. If the client has a feeding, dressing, therapy or transportation need, a temporary replacement is usually unavailable or unqualified. Desperate. Risky.
For the extended family, neighbor, friend, teacher or coach who offers emergency respite, however laudatory, they are but a thumb in the dike.
The solutions are few, but available. They reside solely with the North Carolina legislature. Creating a living minimum wage would be a huge start that would contribute to careers for caregivers. Using the $800 million in Managed Care Reserves would be another starter, or maybe the hugely anticipated fourth-quarter interest earnings on 2019 state investments.
A permanent legislative fix requires taxation, which requires courage. It’s a huge leap, but we don’t have to start there. Forty-four other states wrestle with this wait list dilemma. Some are in litigation, some are finding creative solutions. Few are wrapped in denial and budget gamesmanship like North Carolina.
Local parents and providers, with support from Cardinal Innovations and other area leaders, are taking things into their own hands. They’ve formed Too Long To Wait (ncwaiveractionteam.com), a state-wide coalition of advocates. Their goal is to demonstrate the stamina of those families waiting, the economic and developmental loss to North Carolina and the short- and long-term options available to the legislature. Rather than “storm the palace,” they hope to do the research, study the national litigants and share the collective stories that can persuade legislators, one by one, to build the courage and creativity to stop the embarrassment.
One Forsyth County parent’s heroic, painful wait of 17 years reflects the group’s name: Too Long To Wait!