Sue Callahan’s son was born with a range of intellectual disabilities. Abused as a toddler, he developed post-traumatic stress disorder.

By the time Callahan and her husband adopted him in 2010, the 13-year-old also showed signs of bipolar disorder. For years he ping-ponged between Oahu psychiatric hospitals and residential treatment programs until the state placed him in a Kansas school for people with developmental disabilities.

There, his care and behavior improved significantly, Callahan said. The Hawaii Department of Education paid for it because there were no resources in the islands adequate to meet his needs.

In October, he will age out of the Kansas school. Special education students are eligible for services through the DOE until their 22nd birthday. Then they can apply for services through the state Health Department’s Developmental Disabilities Division, which offers programming for adults.

But that process is drawn out and cumbersome, said Callahan, who remains her son’s legal guardian. She started the application process last summer and has not yet received approval.

“It seems to me, and I mean this sincerely, that they are trying their best to figure out how to reject him,” she said.

In the midst of a systemwide overhaul, Hawaii’s Developmental Disabilities Division is the subject of a surge in complaints filed with the Hawaii Disability Rights Center. The advocacy group has received about 20 complaints since late 2018 alleging a slow enrollment process and reduced individualized budgets with which participants choose services to fit their needs, according to Lou Erteschik, the center’s executive director.

HDRC recently hired a staff attorney and plans to assist families in appealing rejections and service reductions, Ertsechik said.

“I am concerned that these cuts are coming down a little bit too drastically,” Erteschik said. “For years we were hardly seeing any cuts. How is it that all of a sudden everyone needs less services? It’s not like all of a sudden their IQ goes up or their adaptive functioning improves.”

“That has me very suspicious, because now it’s like — presto! — everybody suddenly is getting less services but we know that developmental disabilities typically don’t get better and they don’t go away.”

A New Tool

Mary Brogan, the division’s administrator, said recent service cutbacks represent the division’s effort to correct its long-standing practice of setting budgets based on open negotiations between participants’ case managers and their parents or guardians.

In 2017, the division began to phase in a new evaluation tool called the Supports Intensity Scale to determine the level of services a person needs to succeed in different areas of life, such as learning, employment and socialization. The evaluation produces a score that corresponds to a personalized budget for services.

Previously, the department’s evaluation tool was not tied to budget determinations. 

“Everybody got everything and it didn’t matter what your need was,” Brogan said. 

“A lot of people with very low support needs got a lot of services and a lot of people with moderate support needs got a lot of services and people with high-end needs got a lot of services,” Brogan said. “There were very few determinations based on need, and what Medicaid says is you have to give services based on medical necessity — not on a request. So we had to rein that in and put structure around it because we don’t have unlimited resources.”

Beyond budget determinations, the division is updating many of its policies and procedures to comply with a final rule that establishes enhanced standards requiring states to offer people with developmental disabilities more opportunities to set their own goals, choose their own pursuits and dictate their own schedules.

Meanwhile, Callahan said she was originally told that her son did not qualify for services from the division. She said she is now being asked to provide documentation of each one of his hospitalizations and doctor visits since birth — something she said she can’t do.

“I am concerned that these cuts are coming down a little bit too drastically. For years we were hardly seeing any cuts. How is it that all of a sudden everyone needs less services?” — Louis Erteschik, Hawaii Disability Rights Center

The division serves nearly 3,000 adult Hawaii residents with intellectual and developmental disabilities, such as cerebral palsy, epilepsy, autism, Down’s Syndrome and Tourette’s disorder. Participants must also have a significant functional limitation.

Brogan said the division is aware of its sometimes lengthy and arduous intake process. She said it is attempting to streamline that with a new IT system and better communication with the public about eligibility criteria. The division also recently hired a new medical director to address inefficiencies in the eligibility determination process.

Callahan worries her son will be left in limbo if he is not accepted into the division’s programming by the time he becomes ineligible to continue his schooling in Kansas.

“The crazy thing is, this is someone who is the poster child for developmental disabilities,” Callahan said. “I mean, he has an IQ of 40. If you were to give him $100, he would give it to someone for a piece of candy. He is very vulnerable and it just seems like they are trying to squeeze him out of getting any services.”

Decisions Can Be Appealed

Adopted by 14 states and numerous counties, the Supports Intensity Scale was created by the American Association on Intellectual Disabilities as a tool for evaluating the support needs of people with developmental and intellectual disabilities. Hawaii adopted it in July 2017 and will fully implement it this summer with reassessments planned every three years.

Although widely used, the SIS has its detractors. In 2014, a lawsuit in New Mexico challenged reductions in services to people with developmental disabilities imposed by that state’s health department as a result of its use of the evaluation tool.

A settlement agreement has allowed the state to continue using SIS to assess the needs of developmentally disabled program participants. But instead of being the ultimate determinant, the assessment score is now one of several factors used to help develop budgets for services. 

Dr. Jeffrey Okamoto, a developmental/behavioral pediatrician who last year left his post as the Hawaii division’s medical director, said the SIS evaluation marks a significant change in how the division allocates resources.

“Any tool that is an assessment of a person’s functionality and is tied to a budget is going to get attacked, so that’s not unusual,” he said.

“Wrapping people too tightly with services can be damaging to people just as much as not getting enough service.” —  Mary Brogan, Developmental Disabilities Division

Brogan said the outcry from families upset about individual budget reductions was not unexpected. The SIS has a built-in “exceptions process” that allows families and guardians of participants who disagree with the budget to request a review.

Those who disagree with the exceptions review can then go on to a formal appeals process that culminates in an administrative hearing. Families can also opt to bypass the exceptions review and seek an appeal directly.

Brogan said the division also has an internal validation process in which it contracts with a firm that reviews its SIS assessments for accuracy. As part of this process, participant records are reviewed by a registered nurse and a psychologist.

The division is retooling its programs and services to offer participants more choice and independence in their daily activities, while still providing them with necessary supports.

“Wrapping people too tightly with services can be damaging to people just as much as not getting enough service,” Brogan said.

Lydia Hardie, who works at HDRC as an advocate, said many families don’t know they can appeal the budget determination generated by SIS. The center has been been sending a letter that outlines the appeals process to people who have filed complaints about budget cuts at the division.

“We are trying to resolve the complaints at the advocacy level without having to go to due process, and what we’re seeing is a lot of families don’t know their rights,” Hardie said.

Here’s the advice HDRC is offering to advocates for the developmentally disabled: