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Professional Home-Based Care for Individuals with Severe Disability

June 26, 2019 by Etta Hornsteiner in For Individuals, For Professionals, Health and Wellness, Special Needs Care

severely disabled receiving home-based care

In an interview about nine years ago, Tamara Welter spoke with Neil Conan, host of Talk of the Nation, a radio show produced by National Public Radio, about her daughter Olivia Welter who was severely disabled. Olivia could not move or even blink her eyes. She needed the assistance of machines to help her breathe, eat and take her medication.

As a result, Olivia needed a number of equipment to provide suction, respiratory treatment, and medication around-the-clock as a part of her home-based care.

In this interview with Conan, Tamara Welter emphasizes the need for home-based care rather than institution or hospital care for her daughter with severe disability.

CONAN: I know you’ve said — you were quoted in one of Joe’s pieces, Joe Shapiro’s pieces, as saying — it wouldn’t be safe if aides took care of her instead of nurses.

Ms. WELTER: That’s true. She has pulled her trach out. She’s pulled her feeding button out on occasion. And you have to know what you’re doing to be able to reinstall those safely and quickly to keep the level pads and know what you’re doing, because, literally, her life depends on her trach, so it would have to be replaced immediately.

CONAN: That’s the breathing tube that goes into her neck and her trach –“tracheotomy”?

Ms. WELTER: Yes. And yes, and she’s hooked up to a ventilator 24 hours a day, seven days a week.

CONAN: And as I understand it, she could have been in a hospital for much of the time. You’ve chosen to keep her at home, saving, I guess, the state a lot of money over the years.

Ms. WELTER: Yes. Yes, her facility of alternate placement would have to be a hospital, similar to an ICU room where the nurses are competent and trained to handle people like Olivia with all of her specific respiratory needs and other needs.

CONAN: But as an adult, she would only be provided for in a nursing home; again, may not have the kind of care that she needs. And as I understand it, the adult program would only pay you for home care as much as it would pay for a nursing home.

Ms. WELTER: Yes, that’s correct. And now a nursing home would not be adequate because they obviously do not have the type of staffing needed to give her individual one-on-one care, 24/7, which is what she requires. So it would not at all be adequate.

She has a lot of coughing and needs a lot of suctioning. Sometimes you can hardly even get away from the suction machine long enough to empty the canister and get back to re-suction again because she’s just coughing so much. And I consider it a life-endangering situation if she was not attended to properly.

Why home-based care makes sense

Tamara and John Welter’s daughter’s case is just one of many types of disabilities that exist within the United States.

For many like Olivia, home-based care is more practical for several reasons:

Transportation

Transporting a patient such as Olivia to doctor’s appointment can be challenging.

Safety

Because of sick patients, the hospital can be a high-risk place for people like Olivia who would be vulnerable to infection.

Environment

Patient’s own environment can “improve care and ultimately outcomes”.

The need for professional home-based care for those with severe physical disability

Home-based care is practical; it is also expensive. For example, Olivia’s care calls for nurses to administer her medication. Such treatment cannot be administered by aids. Yet, home-based care is still more cost effective than hospital care, such as in an intensive care unit, where Olivia would most likely be.

However, the biggest obstacle facing home-based care is its lack of standardization. Care and service may differ including their availability and frequency.

Intervention Associates’s care management and guardianship service has seen the need to set a standard for themselves as an organization.

They are prepared for complicated cases such as Olivia, working alongside healthcare professionals to implement interventions that are customized to meet each patient’s needs.

The care managers are trained to build trust and intimacy with the families they work with. Most of the times, these families are physically and psychologically in distressas caregivers. Such stress is echoed in Tamara Welter’s words when she speaks about how little time they have to empty Olivia’s suctioning canister before Olivia experiences a fit of coughing that can result in her death.

Many times parents feel that only they can truly care for their loved one, and this belief may be true. But parents do not have to bear this burden alone. Advocacy is significant to Intervention Associates. They partner with families to achieve the outcomes needed and to be the voice of their clients.

The more complex the case, the greater the need for more skilled care and service. If you are looking for professional care and services in cases requiring acute, specialized care, then Intervention Associates can help you. Their unique model is a type of home-based care that is unique to the individual. There is no “cookie cutter approach,” says Lisa Pettinati, the executive director of Intervention Associates:

The work that we do is extremely complex in that every single case we take on is their own special case. We don’t have a cookie-cutter approach. We have a very individualized approach to working with people. We work directly with those individuals as our clients. We work with their family members. We work with their support system. We work with their professional partners who establish what their needs are.

Home-based care has come a long way and has continued to evolve. As the healthcare model changes to match the needs of patients, home-based care is changing too.  Caring for patients such as Olivia requires compassion, expertise, commitment, tenacity, and trust. These are also the qualities that Intervention Associates brings to every situation.

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