There are more than 18 million health care workers in the United States; 80% of them are women, according to the Bureau of Labor Statistics.

While women make up the vast majority of home health care workers, they are a minority in the C-Suite. Only 40% of the industry’s key decision-makers are female.

Homecare is a tough space to succeed in, and while org charts may not reflect it, this industry is loaded with strong, determined women doing incredibly meaningful work — they simply do not get the recognition they deserve!

Here at HHAeXchange, we would like to take one small step towards changing that. ‘Extraordinary Women in Homecare’ is a series of feature articles designed to celebrate women who bring strength, passion, and creativity to their roles in the home care industry.

We recently spoke with Tina Seidel, Compliance & Policy Director at United Disabilities Services Foundation (UDSF). For more than 55 years, UDSF, a non-profit organization based in Lancaster, PA, has helped the aging, veterans, and people with disabilities live safely and independently in their own homes. In this article, Tina shares her advice for providers just getting started in self-direction, the biggest misconception about participant-directed services, and what she wishes her younger self knew.

How did you first get involved in self-direction?

One of my best friends happened to be an individual with a disability. When her parents won the right for her to go to public school, she needed support throughout the day to go to that public school, and I became one of her attendants.

Fast forward to our college years: She was accepted to Edinboro University, which is an accessible college in Pennsylvania, and I went to Clarion University. One day, she called me about a pilot program for the Pennsylvania Act 150 Program, and asked if I would enroll in classes to become one of two attendants that would designate themselves for her to get on the program’s waiting list. I went to the Erie Independence House, which was then part of Centers for Independent Living, and completed the program to become certified.

We became advocates for the Act 150 pilot program to go statewide. Act 150 has been critical for individuals to maintain their independence and dignity and have the option to work full-time in their own homes and communities throughout the Commonwealth.

What was it that made you so passionate about helping people with disabilities?

For so many years, my best friend had to get on a bus to go to a different school, even though she had the mental capacity to go to my school. I just didn’t understand it. I didn’t get it, and I didn’t think it was right, so that drove my passion for equality, dignity, and independence for individuals with disabilities. I actually used a significant amount of the money I had saved for college to volunteer and advocate for people with disabilities.

What was your first job in the self-direction space?

After years of volunteer work, I realized I’d have to start making money. I always had a strong mathematical background, so that led me to find work in corporate accounting. After about eight years spent running an accounting office, my best friend called to tell me about a finance position available at a Center for Independent Living in Berks County, and she urged me to apply. To appease her, I submitted my resume. I was offered the job, and I’ve been working in the home and community-based services (HCBS) system ever since.

How does self-direction differ from other HCBS programs?

With self-direction, the participant is taking on the employer responsibility. I compare it to starting up your own company. You get to make the decisions, but you also need to take on the accountability, which is a huge piece of the program.

It’s about having control over your services. You select this model of long-term care to have the choice to take control of your own budget, to train your own teams, and to train the individuals that are working with you, in your own environment.

What do you think are the biggest misconceptions about self-direction? 

Excessive fraud, waste, and abuse (FWA). After all these years, I would have thought that misconception would have decreased, but sometimes it’s hard to get past that.

I’m not saying it doesn’t exist, because there is FWA everywhere. Those who are committed to being fraudulent are going to find ways around anything. But there is no increased risk of fraud within participant-directed programs.

I think that the implementation of Financial Management Services (FMS), policies, and procedures along with Electronic Visit Verification (EVV) can help to prevent FWA.

What advice do you have for providers looking to grow their agency by adding self-directed services?

I always say, it’s all about the people. You need to acquire a team of individuals who are well-versed in FMS, can work together cohesively, and are respected within the industry. You need that knowledge. Once you have those key individuals, you can recruit other team members for them to mentor.

Do you have any tips for successfully training new staff?

It’s important to have mentors who are willing to share their knowledge with others and prop their team members up.

Applying person-centered planning when setting up the training plan is key, especially when you’re hiring individuals that may not have an FMS foundation of knowledge. Each person is different. Not all individuals are going to learn in the same structure.

What are some best practices for agencies to ensure compliance?

You need someone dedicated to compliance and policy, because compliance can get lost if it’s encompassed within another position within the organization. The compliance position should report directly to the CEO or board so that it can remain completely neutral.

Policies and procedures are a process, not a project, in that there is constant change which can be impacted by requirements and regulations. A good practice is to review all policies and procedures at least annually, and review bulletins that may impact your process throughout the year.

How has self-direction changed in the past 20+ years?

Technology changed everything. When I first started in self-direction, FMS providers were drowning in paperwork. Each month, we’d spend hours mailing budgets to participants, brokers, and anyone else in the circle of care. At the end of each quarter and end of the year, there’d be additional rounds of information to be sent for taxes. The worst part was, those records were just for looking back at the spending, rather than being used to proactively plan and make adjustments.

Now with up-to-the minute access to budgets thanks to technology, participants, families, and support brokers can access their monthly budgets and readjust plans based on emerging needs. Agencies also save money on printing and postage, and can reserve their staff resources for more productive or meaningful tasks.

What changes would you like to see made in the HCBS programs?

It’s all too easy to get lost in the politics of HCBS and lose sight of the main purpose. In self-direction, our work is to ensure individuals of all ages, with all types of disabilities, can maintain their independence at home and in their communities by giving them the authority to choose the services and supports that work best for them.

At the federal level, there is one change that I’ve wanted since I found out about it: Section 1919 of Title XIX of the Social Security Act, 42 U.S.C. 1396r. People who need long-term services and supports (LTSS) can get them in institutions no matter what. But what about the right to HCBS for the long-term?

The same long-term services and supports should be available in the community without the need for a waiver to be approved.

There has been some headway over the years, but not a reversal that HCBS is your right and needs to be waived for institutionalization to occur. Advocacy for every US citizen to have the right to choose HCBS over long-term care facilities is always a goal, but we need more funding and investment in the passage of healthcare reform, additional legislative changes, and support for direct care workforce initiatives in order to reverse institutional bias.

How do you give back to the community?

I am currently a member of the Pennsylvania Association of Home and Community Based Services Providers (PA HCBS), and past president of the PA Providers Coalition Association. I’m a Falls Lions member and I volunteer for the Falls Active Adult Center. I also chaired the Luzerne County Conduct & Ethics Commission for over three years.

But I think the biggest way I give back to my community is by being a mentor, and passing along my knowledge to others within the industry.

What is the best piece of advice you ever received?

Collect memories, not things. I wish I started doing that at a much younger age. My parents passed away within six months of each other. I had been working 60-hour weeks for 18 years straight. My husband said to me: You need to stop living to work, you need to work to live. I came to the realization that I needed to change my mindset.

Since I made that change, I’ve been really happy. I used to be the person who couldn’t stop working, but now I realize that to prop up others, you need to prop yourself up first.

And save for retirement!