By Jason Jenkins, Wayzata Community Editor of the Sun Sailor
Hammer Residences reflects on advances, obstacles as it celebrates Developmental Disabilities Awareness Month
Hammer Residences has made a mission out of giving adults and children with developmental disabilities the opportunity to live life to its fullest. And all through March, the Wayzata-based nonprofit and residents of Hammer’s 46 homes and apartment programs are celebrating Developmental Disabilities Awareness Month.
John Estrem, Hammer’s CEO, said the 92-year old organization has helped shape the landscape of developmental disability care in Minnesota.
Hammer’s settings of care include group homes, apartment complexes and in-home services. Apartments are typically reserved for those able to live more independently, with on-duty staff providing help as needed. Group homes settings are set up for more constant care. Hammer also provides staff for in-home care for those living in their own home or with someone else like parents or a guardian.
Through its apartment program, Estrem said Hammer has been able to offer a higher level of service to those unable able to live completely on their own.
“They’re able to live in their own apartment, but still have a sense of community and the support that they might need,” Estrem said. “That’s been somewhat innovative. We now support 120 people in 10 different apartment programs… That’s something that we’ve been kind of developing and refining along the way.”
Whatever the living situation, Estrem said Hammer’s goal is simply to help those living with developmental disabilities lead their own lives.
“I think that’s probably one of the biggest changes in our field in the last couple of decades,” Estrem said. “Today, we look at people as individuals and we try to design support for the individual rather than getting the individual to fit some predetermined program.”
That notion of crafting individual-based support was laid out in the Americans with Disabilities Act, which marks its 25th anniversary this year. Signed into law in 1990, the wide-ranging civil rights law prohibits discrimination based on disability. It’s a law similar to the Civil Rights Act of 1964 that called for the protection against discrimination based on race, religion or gender.
To celebrate the anniversary of the Americans with Disabilities Act, Hammer will role out social awareness campaigns throughout the year and is inviting people to join through its website and social media.
Tony Baisley, Hammer’s director of communication, said the hashtag #DDAware will be used on Hammer’s Facebook and Twitter pages to connect those supporting or looking to learn more about the Americans with Disabilities Act and the services Hammer provides.
“Throughout the year, we will be unveiling some more public awareness campaigns acknowledging people with disabilities and how far we’ve come and how far we have yet to go,” Baisley said.
‘How far we have yet to go’
While those connected to Hammer are celebrating Developmental Disabilities Month and the Americans with Disabilities Act, Estrem points to several ongoing challenges organizations like Hammer are facing.
“It’s always an issue for people with disabilities to find employment, gainful employment particularly, that pays at a living wage and is in the community,” Estrem said. “That’s been a longstanding struggle and it continues to be a struggle going forward.”
Funding for services is another challenge Hammer and other nonprofit organizations face. With decreases in state and federal funding, organizations are finding it more difficult financially to provide the same level of support offered in the past.
“Funding that, 15 years ago, was really quite robust is now actually not enough,” Estrem said. “And that’s a pretty big change for us well.”
Currently, there is a statewide moratorium on group homes that are licensed corporate adult foster care facilities. Reasons for the continued state restrictions, Estrem said, have likely centered around the cost of building group homes and a mistaken belief that there is enough capacity within the current number of group homes.
“Our point of view is there needs to be, what I sometimes call, a continuous continuum of housing options for people with disabilities,” Estrem said. “There has to be things all along the spectrum as far as levels of support.”
While the moratorium has sped up the development of Hammer’s apartments, it has made it more difficult for people who need the higher level of support provided in a group home.
And as the next generation of people living with disabilities look to move out of their parents’ homes and into a more independent living situation, Estrem said he’s seeing the need for more space.
“While funding is a huge issue around access, the truth of the matter is, we just don’t have any openings. So, even if people had funding, we have a hard time getting them in because there just aren’t enough group home beds, at least in the Twin Cities….We take a call a week probably from families who are often very much in distress because they cannot find services,” Estrem said.
While there are no bills currently at the state legislature that would lift the moratorium, Estrem said he’s beginning to see support, particularly among families looking for services.
“It hasn’t gotten to the point yet of generating any public policy stances on it, but there certainly is a groundswell,” Estrem said.
Another challenge Hammer and other organizations providing care to the developmentally disabled is around the state’s current efforts to comply with the Olmstead Act, a federal law requiring states to ensure the most integrated settings for care in an effort to eliminate unnecessary segregation of those with developmental disabilities. Writing an Olmstead Plan is how states document what needs to happen and what they plan to do to comply with federal rules.
Estrem noted that there’s been tension around what it means to comply with the federal Olmstead regulations and how Minnesota’s plan should be written.
Dr. Darlene Zangara, executive director of Minnesota’s Olmstead Implementation Office, said the system the state sets forth needs to be respectful and responsive to the choices of people with disabilities. Zangara said the Olmstead Plan should be about choice.
“We need to have a full range of options available for people with disabilities. For some, a group home may be the most integrated setting. Other people with disabilities may choose to live in a group home. But for some people, they may want services that would allow them to live in their own apartment,” Zangara said.
Questions remain among states and organizations like Hammer over what it means to be compliance with the Olmstead Act. Does the act’s “more integrated setting” requirement mean moving away from the group-home model? Does it mean having to offer the most independent settings possible?
“Every state is grappling with that and trying to figure it out,” Estrem said.
Joy Martinka and her mother Ann sit in the living room of their Eden Prairie home. Joy, a sophomore at Eden Prairie High School who was born with Down syndrome, recaps her busy day. Among the subjects studied in school, she said, were math, photography and social studies.
Joy, like others around the word living with Down syndrome, is also getting ready to celebrate World Down Syndrome Day Saturday, March 21.
Ann and her daughter Joy stand in the backyard of their Eden Prairie home March 12. Joy is a sophomore at Eden Prairie High School and Ann works in the travel department at Hammer Residences.
Ann works in Hammer’s travel department where she helps plan vacations for Hammer residents.
“It allows everybody to have the chance to go on vacation like everyone else … Just because you need extra support doesn’t mean that you can’t do things,” Ann said sitting across from Joy. “And we tell her all the time. It doesn’t mean you can’t do it, we just do it modified.”
And when it comes to texting, Ann said her daughter is no different than any other teenager. Ann said Joy loves to type out messages and that getting a cell phone has actually helped her daughter communicate. It’s also helped Joy keep in touch with her brother, who is attending his first year of college in Madison, Wis.
“For somebody with disabilities, that form of communication is so awesome,” Ann said.
When asked about her plans for after high school, Joy replied with one word, “TASSEL,” referring to Eden Prairie School District’s TASSEL Transition program designed for students 18- to 21-years-old living with special needs. After that, Joy hopes to go to live with roommates, maybe go to college and then get married.
While the 16-year-old is living at home, Ann said where Joy will go once she’s ready to move out is a lingering concern.
“You don’t know who’s going to care for your child as much as you do,” the mother said.
It’s a fear that Ann said her four years of working for Hammer has helped alleviate.
“I’m not as afraid of the future as I used to be because I’ve met people at Hammer and I know that good care is out there,” Ann said, “And Joy certainly doesn’t want to live with us for the rest of her life, and we don’t want that for her. So, we were kind of stuck not knowing where to go, but now I feel good.”
Contact Jason Jenkins at firstname.lastname@example.org