CORONAVIRUS (COVID-19) RESOURCE CENTER Read More
Add To Favorites

Their Voice: Utah organization reflects on 30 years of history serving developmentally disabled

Daily Herald - 8/7/2017

In 1957, author Allen Saunders profoundly wrote, "Life is what happens to us while we are making other plans." This is an appropriate way to summarize the story of Gerald Nebeker and RISE Services. In 1987, Nebeker's plan was to continue working in the public school system, but instead there was a much bigger opportunity that would change his professional and personal course.

Prior to the signing of the American's with Disabilities Act in 1990, there were changes taking place on a national and state level for the disability community. According to Gary Nakao, then director of the Division of Services to the Handicapped (later changed to the Division of Services for People with Disabilities): "?the first major expansion in community-based services for persons with developmental disabilities came partially as a result of funding crises at Utah State Developmental Center." He continues, "In November of 1985, a Medicaid Federal Survey Team advised the State that unless 'Active Treatment' was provided to all of the individuals residing at the Developmental Center by April, 1987, the State would be in danger of losing nearly 15 million dollars in federal money to operate the developmental center."

As funding for the center was compromised, a new plan of action involved taking people out of institutions and placing them in home and community-based services. Home and community-based services, as defined by Medicaid, "provide opportunities for Medicaid beneficiaries to receive services in their own home or community rather than institutions or isolated settings."

There were two major barriers at the time in getting the people moved from the institutions back to their homes and families. The first was that many of the people who put their family members in institutions had been advised to relinquish contact with them. As a result there was little, if any, sufficient information connecting them back to their families. The other barrier was that funding was not available to families to care for their own members with special needs.

With family reunification out of the question, the search began to find families that would take in and care for adults and children with developmental disabilities. Since this was a new program for Utah, there weren't many restrictions or regulations in place for who could take these individuals other than it had to be a couple. Families were paid a rate of $12 to $18 per day depending on the needs of the person moving in. There were many skeptics who believed that it was not possible, but eventually all of the individuals from the institution were placed in homes with families. This model, now referred to as the Professional Parent program, originated in Utah and has since been duplicated in other states.

Once the placements were complete, the next step was to provide staffing to support the families in their new caregiving roles. The state put out a request for proposal to the private sector with the intention of contracting them to manage the workforce that would be providing the hourly in-home services.

Although he didn't realize it at the time, this is where Nebeker's career would make a dramatic change. Nebeker and two friends answered the request and were granted the contract in 1987. The following year, the state decided to similarly put the management of the professional parent program out for bid and eventually awarded it to Residential Support Inc. (later changed to RISE Services, Inc.). Under their oversight new screening systems and training requirements were implemented to increase training requirements, improve the skills of the staff and professional parents and provide a higher level of safety for those being placed.

With the new contract, Nebeker realized that this "lark" as he often refers to it, was going to be his new direction and made the decision to buy out his partners and change his status from "for profit" to "nonprofit."

"Becoming a nonprofit organization," Nebeker said, "allowed us to put all of the resources back into the business all of the time."

Although the professional parent model was doing well, biological families were beginning to advocate on their own behalf first asking for similar financial support that professional parents were receiving and eventually the ability to hire staff to come to their homes and support their family member. Eventually they were granted this funding, but most families did not have the knowledge or experience necessary to manage all of the intricacies involved in hiring and paying staff or the various state and federal taxes associated with employment. In 1995 Acumen was created as a fiscal agent to provide these services to families who wanted to manage their own services. Acumen is currently providing similar services in 16 states across the country.

Besides adding Acumen to the organization, RISE eventually added businesses in Arizona and Oregon where, in addition to Utah, they continue to provide numerous services including early intervention, employment services, residential living, supported living, foster care, behavioral and mental health, family supports, senior care, after school care and summer youth care. Together the three states collectively employ over 2,500 individuals and hundreds of contractors who support thousands of adults and children.

Nebeker insists that it all began by being in the right place at the right time. A time when creating change for people with developmental disabilities was new to our government and our communities. A time when out of the box thinking was necessary because there were no business models to duplicate. He can still recall the names of hundreds of the people whose lives were changed by simple acts of kindness and changes in cultural beliefs over the last 30 years.

Even though it would be natural to take a step back from working, instead he has used that same pioneering spirit that started RISE and set his focus on creating an online opportunity for families who have children with all types of special needs to inform, support and connect with each other through Orange Socks. After a short six months, Orange Socks has highlighted 160 stories in more than 230 countries with more than 4.5 million people visiting. One more admirable accomplishment for a man who changed the course of hundreds of lives with one small decision. Congratulations to Gerald Nebeker and all the people who continue to live out his vision.

Nationwide News