The Developmentally Disabled ‘Consumer’
Nestled on a quiet street in the Brookmere housing development in Fruitport Township, the new MOKA group home is barely distinguishable from the houses around it. Originally intended for a handicapped man and his family, the driveway is oversized to accommodate wheelchair access, and there are no steps going in or out of the house.
It is the residents of this freshly built home that are remarkable: Six developmentally disabled men and women in their 20s and early 30s under the care of the Muskegon-based MOKA Corp. Caregivers support the residents at all times, although some are largely independent. A few are gainfully employed and volunteer their time as fully functioning members of society; others need a much higher degree of support.
Not even 15 years ago, these “consumers” would not have been living in this suburban enclave. More than likely, they would have resided in an institutional setting, probably the former Muskegon Regional Center, the campus that is today home to Baker College.
“Today, the idea is to place individuals with developmental disabilities in a neighborhood and get them involved in the community,” said MOKA Executive Director Thomas Zmolek. “The goal is for them to be integrated into society as fully-functioning, tax-paying citizens.”
By definition, a developmental disability is distinguished as a disabling condition that occurs before the age of 18, will continue indefinitely, and has a severe impact upon the ability of the affected person to function independently in society. Common afflictions include retardation, autism, cerebral palsy, and epilepsy, which may or may not be accompanied by a physical disability.
Over the past quarter century, the health care industry has completely reversed its philosophical approach to the developmentally disabled. Depending on the degree and character of the disability, individuals have a wide range of capabilities, and caregivers today serve to support whatever abilities they have.
The degree of care an individual receives is entirely determined by the consumer, as they are called within the industry. Some of these consumers in the West Michigan area require 24-hour care, while others receive support for employment and community activities. Some graduate from the programs, moving on to live independently of the support organization — MOKA recently helped a consumer purchase a house.
A roughly $15 million nonprofit agency serving Muskegon, Ottawa, Kent and Allegan counties (the root of its name), MOKA is one of a half-dozen organizations serving this segment of the population under the umbrella of network180, Kent County’s Community Mental Health Board, along with Goodwill Industries of Greater Grand Rapids, Hope Network of West Michigan, Spectrum Community Services, Thresholds and Genesis Housing.
Although the organizations work collaboratively, they are fiercely competitive with one another, providing many of the same services with only slight differences.
“If they are not happy with our services, they could fire us and go with another provider,” said Zmolek. “The shift has been to the consumer and away from the provider; it’s a market-driven approach.”
MOKA operates 35 group homes in the four-county area, and has been experimenting with smaller models of two to five beds. It has its own placement and counseling service, and has seen particular success placing individuals in jobs at the Double JJ Ranch & Golf Resort in Muskegon.
Thresholds, a $15 million Grand Rapids-based nonprofit, has identical goals to MOKA, but with a distinctly different approach. It operates only 15 homes, but provides temporary respite care to 150 families each year and social work services to another 850 individuals.
“It’s all done on an individual basis, a person-centered plan,” said Thresholds president and CEO Thomas Ferch. “The goal is to always be able to have people moving to a less restrictive environment.”
Ferch pointed to a group of three Thresholds residents who recently moved from a group home into an apartment with only moderate supervision by the organization — a very big step for the men and a notable success for the organization.
“We’ve also closed some cases; some individuals are now able to function without our services,” Ferch said.
Thresholds contracts for employment support through Hope Network West Michigan, another provider of residential services. Tracy Hamlet, director of residential and clinical services for the $30 million organization, explained that it is an exciting time to be working with the developmentally disabled, as the person-centered planning philosophy has evolved to a point where consumers are integrating into society as never before.
“We served a gentleman 15 years ago whose No. 1 goal was to work at Meijer, and no one thought that was possible,” said Luisa Schumacher, marketing director for Goodwill Industries. “The employer went out on a limb, something that never really occurred in the past. Since then, there has been a dramatic movement toward integrating persons with developmental disabilities into the greater community.”
Job placement is Goodwill’s primary service, and it devotes the bulk of its nearly $20 million local budget toward doing so. Although founded on behalf of the developmentally disabled, it today serves many different types of individuals with barriers to employment. Both Goodwill and Hope Network have in-house skill training programs: retail, food service and manufacturing at Goodwill and contract manufacturing at Hope Network.
Schumacher said that support organizations have been more than willing to help employers place consumers. A recent example saw Goodwill retrofit a deep fryer so that a consumer without the use of his right hand could flip fries with the right-handed device.
Hope Network last year launched a micro-enterprise program allowing consumers to start their own small businesses, working in vending, selling art, as paid speakers and other tasks. There are 16 consumers in the program, with five businesses currently up and running.
In all these circumstances, one of the most difficult challenges support organizations face is convincing stakeholders that consumers are capable of living independently, working, volunteering, or whatever it might be.
“You really have to work to break down that perception,” said Hamlet. “You need to bring everyone to the table and show that this person can do it.”
In the past, parents have often needed as much, if not more, convincing as potential employers have. The common perception of the developmentally disabled is that they are operating with the intelligence of a child, MOKA’s Zmolek said, but that is not the case.
“These are adults,” he said. “And that’s been one of the biggest paradigm shifts. Parents are realizing that they need to allow their children to make decisions; they are realizing that at some point, they have to make that transition.” HQX