Category: Self-Direction Worldwide
-Lynn Breedlove
Terry Lynch moved back to Wisconsin in the 1980s to help his elderly mom Leila stay in her own home. Long before the IRIS program, he worked with his mom’s county case manager in the Community Options Program to cobble together a homemade version of self-direction. He called it “The Campaign” to keep Leila out of the nursing home, in spite of her increasing mental and physical frailty. As her only child, he recruited friends, neighbors and home care workers to join The Campaign.
It worked. Leila’s workers became her family. Leila’s health declined and her dementia increased, but she never set foot in the nursing home. She had some medical crises, but Terry and Leila’s team consistently overcame them. At her memorial service, her home care workers sat in the family pew.
Terry took the lessons he learned from that experience and wrote an excellent book, But I Don’t Want Eldercare. He also supported families, IRIS consultants, and self-advocates to help make self-direction work in the lives of many older people and people with disabilities in Wisconsin and other states and countries. He was one of the founding Board members of In Control Wisconsin.
30 years later, Terry needed long-term care himself. Just like his mom, he wanted to keep living at home as long as possible (in the same house he had shared with Leila). He enrolled in IRIS and stayed at home until his long-term care needs outstripped the supports the system was able to provide in the midst of the workforce crisis. He spent 1.5 years in three different nursing homes until he passed away on September 10.
The Terry and Leila Story contains several important lessons, which reflect many of the core principles in Terry’s book. Here are some examples:
- “Tap into the Power of Community” (say Yes to friends and neighbors who offer to help – Terry and Leila did that a lot)
- “Be open to finding Allies among paid providers of services” (Terry and Leila developed close friendships with their paid caregivers - that positively impacted service quality and kept staff turnover low)
- “Age is Not a Diagnosis” (when the doctor told Terry that his mom was losing her balance “because she’s old”, he insisted on getting more tests to find the true cause, which turned out to be her medications)
- “Rehab is not only for the Young” (Terry advocated for aggressive physical therapy for his mom and later for himself, even as his physical abilities declined)
- “Preoccupation with Safety can be Risky” (Terry was willing to take some risks to stay in his own home – he considered that to be part of self-direction; if safety had been the highest priority, he would have had to move into a nursing home much earlier)
Terry and Leila live on, through the example of their tenacious determination to keep living at home as long as possible; due to Terry’s deep belief in the power of self-direction; and with the legacy of the practical and timeless wisdom contained in Terry’s book.
Scotland Report #2: Challenges to Self-Direction Around the World
-Lynn Breedlove
In August, I represented In Control Wisconsin at an international Disability Congress in Scotland, and presented a paper there: www.incontrolwisconsin.org/selfdirectionworldwide. I attended several workshops on self-direction and participated in a brainstorming session with self-direction advocates from several countries. I learned a lot, including the dangers and difficulties facing self-direction in other countries (which have similarities to the challenges we face here). I believe that Wisconsin can learn from the strategies being used elsewhere to overcome these challenges, which I hope to learn more about in the coming year. Here are some of the challenges I heard about, and some thoughts about how they connect to Wisconsin policies and practices:
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Self-Direction Challenges in Other Countries |
Connection to Wisconsin Policy or Practice |
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FUNDING. Self-direction has been popular in England for several years, but two years ago the government cut funding for “personal budgets” by 40%. Today, many people aren’t receiving the level of support they need, which has led to some disillusionment about self-direction. |
Self-direction advocates in Wisconsin have worried this could happen here, but so far disability and aging advocates have successfully defended Medicaid long-term care programs (including IRIS and Family Care) from significant funding reductions. |
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RED TAPE. Some individuals and families say they are worn down by all the paperwork, procedures, rules, etc. associated with self-direction. |
Some IRIS participants and families using the IRIS Waiver have made similar comments in recent years. |
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FREE MARKET. In some countries, there are unrealistic expectations of the “free market” (i.e. an assumption that whatever people need will automatically be available in the marketplace of services). That’s not always true. |
Just having funding in your individual self-direction budget for something doesn’t guarantee you’ll get it. Some supports and services aren’t available in some parts of Wisconsin, e.g. some people who want a community job can’t find a local provider agency or independent job developer/coach to help them achieve that. |
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CONFUSION. In many countries, it’s not exactly clear what self-direction means and who can do it. Is it something people have to do on their own, or with the help of family/friends? Is it only for people who have already demonstrated self-reliance? Or for anyone who chooses it? |
We have some consensus between government and advocates about these things in Wisconsin. State law says anyone who is eligible for Medicaid long-term care can choose to self-direct their supports and services, but there continue to be examples of confusion in our system, e.g. when people are told, “You wouldn’t be a good candidate for self-direction”. |
Scotland Report #1: An International Brainstorming Session of Self-Direction Advocates
-Lynn Breedlove
On August 8, I participated in a half-day brainstorm of 23 self-direction (SD) advocates from 9 countries. It was the first time I’d ever been part of a conversation about what’s happening in self-direction around the world. I began to get a sense of the potential for a Global Self-Direction Community. Here are a few takeaways:
Insights re Specific Countries
North America
- Ontario, Canada: Ontario is just beginning to scratch the surface of self-direction (“we have a long way to go”); not much SD activity in other Canadian provinces
Europe
- Scotland: A lot of local control in Scotland: 31 different implementation mechanisms for self-direction (and they’re not always consistent with Scotland’s progressive SD legislation)
- England: People self-directing in England experienced a 40% cut in funding during the last two years - that led to a lot of disillusionment about self-direction
- Republic of Ireland: There is only one person with I/DD self-directing in the Republic of Ireland (he and his dad were at the meeting), but a new pilot for 150 people is in the works
- Northern Ireland: In Northern Ireland, the initial self-direction pilot started out well, but then various local authorities turned it into their own distorted versions of self-direction - that’s been discouraging
Asia
- India: Self-direction is informal in India - it basically involves giving local people a little money and some space to organize, create, and innovate
Australia
In Australia, the enabling legislation in the NDIS (National Disability Insurance Scheme) sounds very progressive but they tried to grow from zero to 460,000 people nationwide in two years - that was way too ambitious and there are lots of implementation problems
Worldwide Key Issues, Concerns and Questions raised by the Group
- People with disabilities are at risk of having “our lives outsourced to government”
- The “self-direction brand” is at risk of being corrupted
- “Paid services should always be supplementary and complementary, and not the meaning of life”
- “If you do the right thing and do it well, you will almost certainly increase cost-effectiveness”
- How can we stay true to the spirit/essence of self-direction?
- How can citizens hold government accountable for doing self-direction right?
- We need to beware of “neoliberalism” (a tendency to assume free-market capitalism will solve everything)*
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*in the context of self-direction, I took this to mean that it would be a mistake to assume that all the supports and services people might need will automatically be available in the marketplace - this is especially a problem in rural areas