Supporters of Independent Living Call for Legislation to Protect Home Services and Discourage Institutionalization

Lakefront Nursing and Rehabilitation Center is located on 7618 N Sheridan Road in Chicago, Ill (Shen Wu Tan/MEDILL)

By Shen Wu Tan

A proposed bill that safeguards Illinois home care services passed the House Human Services Committee on Wednesday.

The bill, HB 4351, sponsored by state Rep. Greg Harris (D-13), would prevent Gov. Bruce Rauner from increasing the eligibility score for community-based services until a new assessment tool is developed. 

HB 4351 also prohibits the state of Illinois from implementing “an updated assessment tool that causes more than 1% of then-current recipients to lose eligibility.”

Home care services enable customers to live independently in their homes instead of being institutionalized, Harris said. “This [HB 4351] is to protect seniors and people with disabilities from being forced out of their homes and into nursing homes and institutions.”

Amid the chaos of the Illinois state budget impasse, advocates of home care services such as Access Living said the possibility of losing services concerned them.

That concern partially stems from Governor Rauner’s amendatory veto of HB 2482, a bill similar to HB 4351, in 2015, and his past efforts to raise the determination of need score from 29 to 37. If the determination of need score increased to above 29, approximately 40,000 seniors and individuals with disabilities would immediately become ineligible for services, according to Harris.

The determination of need score is an assessment tool for seniors and individuals with disabilities to receive community-based services such as home care from personal assistants.

The governor withdrew plans to raise the score last November.

“For Access Living, the worry is uncertainty,” said Gary Arnold, the public affairs manager of Access Living. “With the political climate in Illinois, nonprofits and people who use social services have no assurances that programs are secure. This bill will help bring certainty to people with disabilities who receive Home Services.”

In a January letter to Harris, Richard Goldberg, the deputy chief of staff for Legislative Affairs, assured that Governor Rauner had no plans to raise the DON score. “If you are under the impression that the Governor intends to reverse course and re-submit a request to raise the DON score, you are mistaken,” the letter states.

Despite assurances, some home care clients said they are anxious that the governor might change his position, making them ineligible for services and forcing them to move back into institutions.

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Yarbrough types on a computer during his security guard shift at Access Living. He has been working at the organization for almost a year now. (Shen Wu Tan/MEDILL)

Jimmie Yarbrough, 56, is one of those clients. Yarbrough lived in Central nursing home for four years, two of them bedridden.

Twelve years ago, Yarbrough discovered he had a degenerative spinal disease that deteriorated thoracic vertebra bones in his spine. Doctors told him he would need a wheelchair for the rest of his life and discharged him to the nursing home for therapy.

While residing at the nursing home, Yarbrough said his independence was stripped away and the living conditions were poor.

According to Yarbrough, the nursing home had one nurse for every 12 beds or so. Due to a high ratio of patients to nurses, many residents did not receive proper care and were frequently left in bed and overmedicated.

For Yarbrough, each day was the same-old routine—a redundancy of mundane daily tasks.

Each morning, he would wake up, eat breakfast, sit on the patio and maybe play chess. His lunch and dinner routines were equally repetitive.

Yarbrough said he did not have free will to leave the nursing home. Each time, he had to sign out of the home to release liability and arrive back by curfew to avoid additional restrictions imposed by staff.

The nursing home staff also controlled his finances, offering him only $30 of his $733 social security benefits a month.

Suffocating from the restrictive environment, Yarbrough escaped institutionalized care through a reintegration program at Access Living called Stepping Stones.

Stepping Stones is a peer support group for current and former nursing home residents that provides educational workshops on financial literacy, healthcare, computer skills, budgeting, disability pride and community resources.

Gregory Hutton, a Stepping Stones graduate, watches television in his single room at Lakefront Nursing and Rehabilitation Center. He has lived at the nursing home for five years now. Placed there after his car accident, Hutton is excited to leave the nursing home and move into his own apartment next month. (Shen Wu Tan/MEDILL)

In addition to workshops, housing counselors at Access Living place residents into accessible, integrated housing units. For years, the Chicago-based cross-disability organization dedicated time and resources to the deinstitutionalization cause.

Mary Delgado, the Stepping Stones intake coordinator, stressed the importance of independent living and said she disapproves of institutionalized care.

“Supposedly a nursing facility is supposed to take care of you,” Delgado said. “But it doesn’t. You have poor quality food. You aren’t able to bathe when you want to…Your independence is really stifled.”

In 2008, Yarbrough graduated from Stepping Stones and finally moved into an accessible one-bedroom apartment on the West Side. He receives home care services from two personal assistants who visit him on a daily basis.

Also, Yarbrough has been working at Access Living as a security guard and personal assistant to Delgado since April.

Ever since leaving the nursing home, Yarbrough said he promised himself he would never go back to institutionalized care, and that he will do whatever is necessary to defend his right to live independently, including advocating for the passage of HB 4351.

The bill has been referred to all House members for review.

Photo at top: Lakefront Nursing and Rehabilitation Center is located on 7618 N Sheridan Road in Chicago, Ill. (Shen Wu Tan/MEDILL)