PCPID Quarterly Meeting: September 26–27, 2011

Longterm Services and Supports/Community Living

Nancy Thaler, Executive Director, National Association of State Directors of Developmental Disabilities Services

Nancy Thaler began with an overview of the Long-term Services and Supports/Community Living, noting evidence of significant change across the country, from institutional to community care. Soon, eleven states would have no publicly funded institutions. Ms. Thaler noted in that group, Alaska and Oregon currently have no privately funded institutions, and they seemed to be doing just fine.

Ms. Thaler reported that major problems face the states. The national structural budget deficits will combine with the recession and Baby Boomers reaching retirement age. Medicare and Medicaid are expected to rise rapidly while Social Security shrinks, and the demographic shift reflects a growing demand for services, and a lack of growth in the number of care givers. Ms. Thaler stressed the necessity of confronting reality. Public funding growth will slow, while the workforce will not keep pace with the demand, and waiting lists will increase. Many states, do not keep waiting lists at all. Reality calls for reevaluating current services. Citing Lakin's data, the average costs of an ICSMR, public and private combined, cost $225,000 per year per person. The contrast was one person in ICFMR or five people living with their family. This is significant in understanding where the most benefit can be found and the most people served for the money.

When people talk about long-term care services, generally it is in the aging system. When people enter Medicaid, the average length of stay is somewhere between 18 and 24 months. There is not a long-term cost per each person because they are not in the system very long. She contrasted this to people with IDD, who stay a lifetime. The impact of making a decision for a person with IDD early in life had tremendous longitudinal implications.

This idea is nudging the system to be person-centered, to support families, and involve people in the community for the lowest cost. The question was whether people and their families will struggle alone or have a great life because the supports were there for them. The type and amount of support provided to families opened their homes because they had the supports.

Ms. Thaler then responded to the Committee’s four questions, describing basic human and civil rights as core foundational values, and emphasizing the premise that people with IDD want to live like typical citizens.

Subsequently, she identified the following risks: congregating people on the false premise that it saved money and reducing services based on the assumption that people and their families have other alternatives to public services. People with IDD can’t buy private insurance for long term supports and few can pay privately for a life time. Reductions in services, based on assumptions that families can care for family members without assistance, and pressures to solve the dual eligibility problem will push people into long-term care systems not designed for them.

Ms. Thaler outlined the opportunities including: elimination of the institutional bias in Medicaid and creation of an entitlement to community services; creation of incentives to get people jobs; and provision for self-advocates and families to gain more control over services and development of built-in accountability for outcomes.

She concluded by describing the potential economic impact of changes in policy and funding, related to long term services and supports/community living. She suggested reducing the growth curve by substituting community services for institutional services, strengthening families and reducing costs as people achieve employment. Then, she solicited questions. The question and answer period was extensive. Some included the following:

(Presenter-Committee Dialogue)

Mark Gross stated that he had an overriding concern about everything that she said today. He has a 29-year-old child with Down's Syndrome. The family goal, from the beginning, was to have him get a job and live in a group home. From Ms. Thaler's presentation, it sounded like government was going to force families to keep adult child at home forever to minimize costs. He was familiar with the Arc’s saying, “a life like yours,” encouraging people with ID to have a life like everyone else. He assumed that was also for the parents of individuals with ID. He found the whole approach very, very troubling. Ms. Thaler clarified that she was not promoting the idea that people should live with their families indefinitely. The inability to expand residential services means that the waiting list for those residential services gets longer and longer.

Mr. Boatright seconded the sentiments expressed by Mr. Gross. One thing that stood out to him, and that he felt was indicative of the advocacy community as a whole, was the extreme of choice. The options seemed to be either institutional care or live with parents until everyone dies. There does not seem to be a lot of room in the middle for various options.

Ms. Thaler responded that, whether the options can be created, goes back to cost. Some families have devised options that don't require 24-hour staffing, such as pooling resources and having a mother-in-law apartments. Some individuals don't need 24-hour services, so they live with another friend in an apartment. These are all options. However, about eleven states use the approach of individual budgeting.

Ms. Edelsohn was in agreement with Mark and Clay. She thought it was dangerous because the government was giving people an “out” by saying, “we can do it cheaper in the families.” She told of her 39 years old son who had lived in a group home since 1994. She asked Ms. Thaler to consider the idea that it should be self-determined.

Ms. Thaler acknowledged what their point. However, when looking at a waiting list with over half a million people and 23 states reducing the amount of money they invest in the system, she could not say they could figure it all out. The data was overwhelming at the state level that the 12 percent growth seen in residential services in the last 10 years had already stopped. (Mid-Morning Recess)