Independence Can’t Wait: An Interview with Ande Kolp about Home & Community-Based Services

Ande Kolp (third from left) and her children. [image description: A white-appearing family poses in the living room of their home. Five people stand in a line, arms linked. They wear brightly colored t-shirts: 3 women at center, 2 men on either end.]

Ande Kolp is the Executive Director of The Arc Maryland. Over three decades, Ande has supported people with intellectual and developmental disabilities and their families in various positions within Maryland and Iowa. She holds a Bachelor’s Degree in Music Therapy from the University of Iowa and a Master’s Degree in Special Education with a Concentration in Severe Disabilities from The Johns Hopkins University.

Jeneva Stone is the Little Lobbyists blog manager.

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JS: How did you become an advocate? What do you consider your first act of advocacy?

AK: I’m not quite sure but I think I have always been tuned into equity and inclusion and I believe that drives what I do and how I behave!  Growing up in Iowa, I was fortunate to attend a school that was highly inclusive. I’m fairly sure that was not typical back in the 70s, but I had friends on the spectrum of ability (and disability) and so I had the opportunity to see and live how our differences enrich us. 

As I entered the workforce, I first worked as a Direct Support Professional and held that role for a number of years before moving to Maryland where I did a music therapy internship at Crownsville Hospital Center. That experience changed me. I was deeply saddened and also angered at seeing people locked away in large brick buildings that were referred to as “cottages.”  The conditions … Ah ... I can’t describe it in such a way that would respect the experience of the people who had to live there. I think I found my calling then and there that I wanted to use my time on earth to support the voices of people in their demands to live their best, free lives, with quality community-based supports as needed to do so. 

Ande Kolp [image description: A black & white photo of a white-appearing woman with shoulder-length hair, wearing hoop earrings, a light-colored sweater & a dark v-neck top. She poses seated at a piano with framed photos of artwork above the piano.]

What do you find most satisfying about your current role with The Arc Maryland? 

Prior to coming to The Arc Maryland, I had worked for local chapters of The Arc in Maryland and so I already knew I held the same values and believed in the mission of the organization. The state chapter is different than the local chapters in that we focus more broadly on the needs of all families and all people with Intellectual and Developmental Disabilities (IDD) throughout the state, whether they receive direct services from our local chapters or not. We also support children and get involved with early intervention and education advocacy matters. Most satisfying is probably seeing the outcomes of our grassroots advocacy and being a part of that systems change. 

We have a partnership with the Maryland State Department of Education, Maryland Department of Disabilities, and the Maryland Developmental Disability Council on an inclusive schools and disability awareness initiative called “Together We’re Better.” It is really fulfilling to see how the program has grown in engagement with schools and students, and especially seeing/hearing the reactions of the students during assemblies; when self-advocates talk about their school experiences and the students go out of their way to thank the advocates for raising their awareness.  

The legislative session is highly satisfying too because I have the opportunity to meet and interact with so many advocates and partners as we work through the legislative process and together try to move the dial on disability rights and needed resources.

The Arc of the United States has been integral to the development of the Home and Community-Based Services Access Act (HAA), recently released by the U.S. Congress as draft legislation. Could you give us an overview of the HAA and the effort that’s gone into it?

Sure! This is a discussion draft of a bill that will make Home and Community Based Services (HCBS) mandatory, eliminate waiting lists, and do more to create parity across states around access to HCBS. This bill builds on 70 years of The Arc’s history and efforts to help people with disabilities and older adults access the HCBS they need in order to live in the community with friends and family. The Arc of the United States staff have worked hard with legislators’ offices for over a year, and they are also working on materials to support the campaign that will surround this bill. We are only at the beginning of this effort.

For some background: People with intellectual and developmental disabilities often need some degree of home and community based services (HCBS) which provides them with assistance to eat, to dress, for personal hygiene, and for managing health care or finances. For people with limited incomes, these services can only be obtained through Medicaid.  Unfortunately, in Maryland and many other states, the Medicaid HCBS programs currently have long waiting lists. 

There are an estimated 850,000 people on HCBS waiting lists across the country. Currently, the HCBS services and the waiting lists in each state are not “portable.” This means that people with disabilities who are in services OR on the waiting list in one state cannot move to another state without risking the loss of their services or going to the bottom of the new state’s waiting list. This lack of portability traps people in the states where they live.

Medicaid is technically an institutional insurance. It is used for nursing homes and other long-term care services. The Medicaid waiver services in Maryland (meaning that the requirement that these services must be provided in an institutional setting has been “waived”) support people to receive these services in the community (HCBS). While the institutionally-based services are provided as needed--there are no waiting lists--there ARE waiting lists for the HCBS services! That is because in Medicaid, HCBS services are considered “optional.” This is what we term the “institutional bias” of Medicaid that The Arc and others have advocated for seven decades to change. 

This institutional bias persists even though it is shown in study after study that HCBS services are more cost effective and promote the best quality of life.   

To change our national Medicaid system nationally would require a significant investment.  Federal funding will be needed to support states to build their capacities to eliminate the HCBS waiting lists and to serve everyone in need.

 For the HCBS Access Act (HAA) to be successful, and as part of the capacity building that needs to happen, we are going to need a sufficient workforce to support all of the people who come off the waiting lists. There needs to be ample consideration and effort put into saving the HCBS workforce (Direct Support Professionals also known as DSPs), which is in crisis due to insufficient funding and insufficient recognition. The HAA would address this crisis by increasing pay rates for DSPs, providing training/career path guidance, and recognizing DSPs as the career professionals they are through the Bureau of Labor Statistics. 

In all, the changes this bill would create would finally allow people with disabilities the freedom to move from state-to-state without fear of losing crucial HCBS services. 

What does “draft legislation” mean? When might a bill be introduced in the House or Senate? What can all of us do to help speed the HAA on its way to becoming law?

“Draft legislation” means this is an idea that members of Congress have developed after a long time of taking stakeholder feedback, but that idea is not quite ready for prime time. The sponsors of this “discussion draft” need feedback from constituents and other stakeholders to fine-tune the proposal and ramp-up the tremendous national support that will be needed to get this bill through Congress. Senators Maggie Hassan (D-NH), Sherrod Brown (D-OH) and Bob Casey (D-PA), and Representative Debbie Dingell (D-MI) developed and released this draft, and now it is up to the community of people for whom this is important to advocate and work with the offices for full introduction, hopefully this summer. 

Each of us can help by reaching out to our representatives in Congress. If each of the 93,000 people in Maryland who have IDD (or a family member) committed to contacting just one representative with a personal story about how community services have or will (in the future) impact their lives, that alone would go a LONG way!

How has advocacy given meaning to your life?

For me, the mission gets me out of bed in the morning. I get excited about it and love to see the changes I and we have been a part of effecting. I am so appreciative of all of the lovely people I have met and now know through my work. I guess I just consider myself incredibly lucky that I get to do what I love to do.

If you could define advocacy in a single sentence, what would that be?

Speaking for yourself (or assisting someone to tell their story)--it is helping people to see what you see, what you believe is needed in the community, and collaborating to accomplish something that will benefit us all--like inclusion, human rights, and in the case of the HAA, community for ALL.