Family Care History - Why People with Developmental Disabilities Need Family Care

COP and CIP are not the LTC system.

The Community Options Program (COP) and the Community Integration Program (CIP) are among the most effective and popular programs in Wisconsin. They provide supports in people’s own homes and other community settings, responding to the overwhelming preference of people with disabilities. And the average public cost for each person served in CIP is less than the average cost of institutional care (nearly 50% less in CIP 1A and 10% less in CIP 1B.) But these programs make up only a small part of the state's’ long-term care system. So why would we want to do something different?

COP/CIP not an entitlement.

Institutional care is an entitlement for people who qualify, but COP and CIP are not. An entitlement means that if a person qualifies, he or she must be served.

1997 Public Spending (in millions)

In 1997, after 15 years of COP being in place, 39% of all public LTC spending for people with developmental disabilities was for institutional services.

Setting Spending (in millions)
Institutional¹ $185 (39%)
Non-institutional² 288 (61%)
Total $504 total

Pie Chart: DD LTC Spending

Too many people are in institutions.

Wisconsin citizens live in Intermediate Care Facilities for Mental Retardation (ICF-MR) at a rate 32% above the national average.

Bar Graph: ICF-MR Population

Waiting lists are long.

COP waiting lists as of December 1998 included 3,055 people with developmental disabilities (of a total waiting list of 10,879). Young people who have been well supported through school sometimes experience big gaps in service when they graduate because there is a long waiting list for adult services. Sometimes people stay in institutions for much longer than they want while they wait for CIP or COP funding.

Fragmented system.

The current system is fragmented into many different funding streams and programs. Each program has its own eligibility criteria, which sometimes have more to do with where a person happens to have been living recently than with the level of the person's needs. Each program has its own payment rates and limits, which also don't have much to do with an actual person's needs. People have to fit into whatever "slot" is open, or wait for a "slot" in the program that would better meet their needs. Local care managers have to patch together funds from many sources to help someone get the services they need. Sometimes, people fall through the cracks between programs and can't access any of them.

How Family Care will make the system more sensible...

  • Instead of separate institutional and COP programs, Family Care will be one flexible benefit for all long-term care services. It will include COP, but will also cover intermediate care facilities, physical, speech and other therapies and many other services and supports.
  • Once implemented within a county, each person who qualifies will be entitled to a tailor-made package of services designed to meet his or her unique needs and preferences. There will be no waiting list for people who are entitled.
  • The entitlement to Family Care benefits will include everyone who is disabled enough to qualify for institutional care, plus everyone who is less disabled but is eligible for Medicaid, plus everyone who needs adult protective services. In addition, people receiving services under Community Aids or county funded programs will be entitled to join Family Care.
  • Community care and institutional care will be on an equal footing. People will have real choices about where and how they get needed care. Funding will follow the person across service setting, time and county lines.
  • Once the transition is made, the system will be much more simple, with fewer cracks for people to fall through.
  • Opportunities for autonomy and self-determination will be expanded in Family Care.

1 Includes nursing facility, ICF-MR, including State Centers for the Developmentally Disabled
2 Includes services for persons with developmental disabilities under age 65 funded by COP, Medicaid home and community waivers, Community Aids, county funds, and Medicaid fee-for-service funding for all non-institutional services that will be in the Family Care benefit.

Last Revised: November 14, 2014