New condos delight those with disabilities

• Federal guidelines are pushing to move people with disabilities out of group homes%2C facilities
• Homes For Life provides residences for people with cognitive disabilities
• State%2C agencies provide support as needed

WILMINGTON – Joe Flacco was there on Day One, present with all the glory a plastic NFL figurine can bear and placed in front of Jeff Jones' living-room television.

The news here is that Jeff Jones has a living room in his own place – his first place, which at 38 years of age comes none too soon. Jones says he has been waiting for moving day his entire life so, of course, one of his heroes, the Baltimore Ravens' quarterback and University of Delaware alum, would have a prominent role.

Jones is one of three young adults who have moved into neighboring condominiums at Justison Landing on Wilmington's riverfront. The furnished units were donated by the Homes For Life Foundation to The Arc of Delaware, a nonprofit that serves as an advocate and resource for those with intellectual and cognitive disabilities.

Jones and Alexandra Jahn, 36 – who is moving into a condo next to his – have worked for Bank of America and its predecessor, MBNA America, for 15 years.

Dayon Stevens, 28, who is blind, is Jones' new roommate and hopes to find work at one of the many businesses nearby.

All three arrive in these independent units under a new set of regulations from the U.S. Centers for Medicare and Medicaid Services (CMS) that govern how and where federal support for home- and community-based services will be provided for people with disabilities.

The feds are moving everything toward greater independence – individual choice, community integration, and self-determination – and away from anything that looks like an institution or a sequestered world where only those with certain disabilities reside.

The rules reflect the mandates of the Americans with Disabilities Act and the 1999 U.S. Supreme Court ruling known as Olmstead, which said people with disabilities must be able to live in the least-restrictive environment appropriate for them.

"Justison Landing is for people who are quite independent, people who don't need 24-hour support," said Jane Gallivan, director of the state Division of Developmental Disabilities Services (DDDS). "It's an ideal setting and they can take full advantage of the wonderful amenities in that area."

If community integration is the goal, that Flacco figurine is probably near the proverbial end zone.

New philosophy

These two-bedroom units are the 26th and 27th residential properties donated by Homes For Life, the foundation created by Micki and Lanny Edelsohn to provide homes for those with cognitive disabilities. Their son, Robert, lives with several roommates in one of the homes on Wilmington's Bancroft Parkway.

The condominiums – worth about $190,000 each – were deeded to The Arc of Delaware, which serves as a sort of turbocharged landlord, providing extended services to residents of its 82 properties that go far beyond leases and minor repairs.

Tenants sign their own leases. A service provider – Community Systems Inc. in this case – supports the residents with assistance according to their needs, and ensures all systems are working well. And the state verifies eligibility for state and federal money, compliance with state and federal requirements, and provides case management and other services.

Federal regulations now require residences to be in community settings wherever appropriate, though precise definitions of what that means still are under construction.

Delaware has until March 2015 to give CMS its plan for how it will award home- and community-based funds and it has until 2019 to comply with the new regulations, Gallivan said.

CMS is providing information on its new regulations little by little, Gallivan said.

"Once we get as much guidance as possible, we will begin to put a plan together," she said. "They want to know - how are you going to evaluate the settings you have? That's not only for residential, but also for day services."

State officials will invite significant public input as the plan is developed, she said.

The regulations have some non-negotiables already, though.

For example, one major rule is that no programs that get federal waiver money can be located on or adjacent to the grounds of a public institution, such as the Stockley Center in Sussex County or the Gov. Bacon Center near Delaware City. Those who have lived on those grounds have been moving into community settings for some time, Gallivan said.

The regulations also govern what happens in those community settings. Residents must have the liberty to choose their day's activities instead of having to follow the dictates of staff.

For example, "if I want to hang out in my PJs to watch TV until noon on Saturdays, I should have that option," Gallivan said. "It's my home."

It's not supposed to be an institution.

Exciting times

Justison Landing sits along the Christina River, amid a host of urban neighborhood amenities – a major cinema complex, a minor league ballpark, shops, restaurants, many small businesses, parks and room to roam.

This past week, Jones and Stevens went together to the Polish Festival, where Jones was winning lots of prizes at the arcade, according to Jennifer Tymes, program director for Community Systems Inc.

Already, Tymes said, Jones had cooked dinner for everyone at his place.

His mother, Suellen Jones of Bear, helped him move in. It's the first time her son has not lived at home or in a group home, she said, and he is excited.

"I've been in a group home for 16 years," Jeff Jones said with a grin as he unpacked a box. "I've been bugging them and bugging them and I finally got out. I've been really looking forward to this – being on my own and lots of fun."

It's a bit different from his mom's perspective.

"It's a little frightening," she said, "but we'll wait and see. ... We'll see how well it works."

Her husband helped to persuade her the time was right for their son.

"We're getting up in years," she said, "and we're not going to be here forever."

Getting their own place is a significant milestone.

"They're graduating," said Michelle Thompson, state case manager for all three. "It's the excitement that they're coming into their own now. ... Seeing their faces when they see their new condos, no less. This is theirs. They've worked hard to overcome all the barriers. They have surpassed everything people have expected of them."

There are fresh memories in Delaware, though, of a recent horror captured on video. The video showed a series of beatings kids delivered to a young man with intellectual disabilities in a Newark neighborhood

It was a disturbing, frightening incident and a reminder that life in the community is sometimes perilous – never more so than for someone with a disability.

"We have to have a strong self-advocacy system where we are helping individuals living on their own or semi-independently to know what to do and how to be assertive," Gallivan said. "We have to be cautious. There has to be a balance. With your rights come responsibilities. People do have the right to live in the community and be as independent as possible. But we have to be sure they have the tools they need to deal with situations when they come up."

Some will encounter rejection, too, just because they are different or someone judges them to be "less than."

"There is a lot of misinformation out there and a lot of misconceptions about persons with disabilities – and those with intellectual disabilities in particular," said Terry Olson, executive director of The Arc of Delaware. "We try to educate folks, be positive and supportive, and we try to be a good neighbor."

There are many challenges, costs, and concerns to address.

But watching Alexandra Jahn twirl excitedly in her new bedroom, talk about where her desk might go and what she might do with the walls, smile and twirl and talk about more possibilities – it made Micki Edelsohn of Homes For Life a bit emotional. Again.

"As a person, a mom, and a taxpaying citizen, this is a very expensive proposition, caring for a population that is very vulnerable," she said. "But it's up to us as a society to do what we need to do to ensure people are cared for properly and getting the right supports.

"I will work with the state and anyone who wants to work with me to try and find solutions for all people."

Contact Beth Miller at (302) 324-2784 or bmiller@delawareonline.com. Follow on Twitter @BMiller57 or on Facebook.