PCPID Quarterly Meeting: February 15–16, 2007

When the Committee reconvened, Chairman Sweezy called on Linda Starnes, Chair of the Subcommittee on People with Intellectual Disabilities and the New Freedom Initiative, to present the speakers and panelists invited to address the subcommittee’s areas of interest and concern. She introduced Dr. Michael Gamel-McCormick, Director of the Center for Disability Studies at the University of Delaware as the first speaker.

Dr. Gamel-McCormick expressed appreciation for the invitation to address the Committee and stated his intention to talk about why EPSDT is important to individuals with intellectual disabilities and their families. He shared examples of three real families enrolled in the early and periodic screening program whose children’s conditions might not have been picked up if they were not looked for during those screenings. Some of their motor and cognitive problems were identified very early resulting in early treatment and better outcomes. They continue receiving supports through the EPSDT program.

Dr. Gamel-McCormick highlighted the history of the EPSDT program and explained it’s purpose to correct or ameliorate defects and mental and physical illness, and conditions discovered by screening services, whether or not services are covered under a Medicaid State Plan. He explained that the program is built on two primary principles, and a third principle that represents a combination of the two:

1. To assure health services are available or accessible to children eligible for Medicaid;
2. To assist eligible children in obtaining needed services and supports; and
3. To mandate that EPSDT programs inform families about the availability of screenings, diagnoses, treatment options, and services.

Dr. Gamel-McCormick expressed that, unfortunately, the EPSDT program is not known by a lot of people, and is therefore not a widely tapped program. He stated that this is particularly true of education.

Dr. Gamel-McCormick then noted these possible recommendations to the President:

1. Requiring the program remain a state component of Medicaid so that every child who is eligible gets the screening process and the treatment process that he or she needs.
2. Retain Medicaid as the payor of first resort; not as the payor of last resort. This helps support those ongoing interventions and treatments that children who have intellectual disabilities need.
3. Retain the tentative limit concept which says that states can put in place a limit on the number of specific services each year, but if a physician or a primary care provider says that the child needs more, that limit can be overruled.

Finally, Dr. Gamel-McCormick addressed the concern that when children in the EPSDT program transition from 21 years of age from the school system, and the child pediatric healthcare system and moves into the adult system, he/she will lose virtually all supports. The EPSDT program could expand beyond the 21-year limit to address needs including skilled nursing care, waivers to provide personal care attendants, etc. Medicaid at the adult level doesn’t always cover this in every state.

Dr. Gamel-McCormick then responded to several questions and comments.

Ms. Starnes introduced the three presenters who comprised the Housing Panel: John Garvin, Senior Advisor to The Assistant Secretary for Housing and Federal Housing Commissioner Brian D. Montgomery at the U.S. Department of Housing and Urban Development (HUD); Jay Klein, Director of the Center for Housing and New Community Economics (CHANCE); and Kathleen McGinley, Deputy Executive Director for Public Policy at the National Disability Rights Network (NDRN). She noted that the Panel was invited to heighten the Committee’s understanding of opportunities and challenges in the area of housing for people with intellectual disabilities from a government perspective as well as an advocacy perspective.

Mr. Garvin thanked the Committee for the invitation to present and stated that he enjoyed the work because with good planning, we can go a long way providing accessible, integrated, affordable housing options for people with disabilities. Mr. Garvin emphasized that there is an incredible shortage of affordable housing. He discussed the debate between integrated community-based settings versus the institutional-type group homes. He mentioned, for example, the Section 811 program—HUD’s main production program housing people with disabilities—a forgivable loan/grant to do construction, and rental assistance similar to the Section 8 program. Mr. Garvin spoke of the Tax Credit Program/Tax Credit Qualified Allocation Plan to address serving special-needs populations, and suggested that the Committee might make a recommendation on providing housing options for people with intellectual disabilities. He noted that HUD has been working with CMS on a new initiative to have money follow the person to transition people out of institutional settings into community-based settings. Mr. Garvin informed Committee members that HUD Secretary Jackson released a letter in November, 2006 asking public housing authorities to make it a preference to work with “Money Follows the Person” clients to get them into public housing. CMS provides the service money; but they can’t provide the housing money; so options must be created. Mr. Garvin encouraged members of the Committee to provide input on how they believe HUD could get some housing options to make the program work.

Mr. Garvin expressed belief that services need to be connected to, and available through, the housing market and illustrated the marketability and popularity of simple services such as transportation to doctors, shopping, etc. He informed the Committee that in the President’s ’08 budget a proposed demonstration program for both Section 811, which is the housing for people with disabilities, and Section 202, which is for Senior Housing would provide incentives to build housing for people with disabilities. He noted, however, that while the 202 and 811 programs are HUD’s major producing programs, they are slow in producing and they’re low in the actual development. And, in tax credits, there are no real extensions. HUD started working on this demonstration program, with the intention to leverage tax credits and have the equity in the development to make the 202 and 811 programs better.

Subcommittee Chairperson Linda Starnes thanked Mr. Garvin for his presentation, and invited Kathleen McGinley to speak to Committee members.

Dr. McGinley expressed belief that it is important to make the case for using data as an advocacy tool, because it statistically demonstrates need. She noted that one of the first and largest barriers to people with disabilities living in the community and being able to find decent, safe, affordable, and accessible housing in the community is the fact that they are poor and that trend has gotten worse. The national average income of people receiving SSI was 24.4 percent of the one-person median income; and they have to compete with other disadvantaged populations who are eligible for the same housing. She also noted that the cost of housing has gone up while SSI income has not gone up, and in spite of work incentives, many people do not have jobs. NDRN has been looking at more Section 8 vouchers for people with disabilities and getting them reallocated to housing authorities and to non-profits who could make sure they go to people with disabilities.

Dr. McGinley suggested that by bringing in 811 money to provide a housing subsidy, and using the tax credit provider for development, more affordable housing would be created, and it would be accessible for people with disabilities. She also emphasized the fact that there are still many developers who are building housing that is inaccessible, 20 years since the enactment of the Fair Housing Accessibility Guidelines.

Dr. McGinley concluded with the problem of unemployment and noted that states can be urged to take a Medicaid buy-in so people with disabilities who go to work don’t lose their health insurance. She noted the importance of taking a whole person approach.

Linda Starnes thanked Dr. McGinley for the presentation, and proceeded to introduce the next panelist, Jay Klein.

Mr. Klein began by discussing the need to add the word “integrated” to the concept of affordable and accessible housing. He discussed the need for systems and policy change and highlighted the importance of a system that looked at the individual. He noted the importance of putting the control of housing and personal assistance into the hands of the individual and their families. He suggested the possibility of using 811 funds—typically used for segregated or congregate housing – for scattered site housing. Mr. Klein stated that poverty, isolation and control —not disability—are the cause of the challenges faced by people with disabilities in the housing market.

Mr. Klein reported statistics related to housing and noted that as we move away from institutional settings, costs decrease. He noted that affordable and accessible integrated housing comes from a variety of sources and by blending public and private dollars housing can be more affordable. He then stated that there is a unique opportunity to attach more HUD home choice vouchers, and attach it to the rebalancing initiatives to create affordable, accessible, and integrated housing. He also recommended eliminating SSI resource limitations and making sure that previously targeted vouchers are used by the intended recipients. Additionally, he recommended using individual development accounts as mechanism for people with intellectual disabilities to save. He concluded by suggesting that SSI recipients be exempt from the earned incomes, and to exclude private IDAs from the SSI resource tests.

Linda Starnes then opened up to questions and the panel and Committee discussed housing specifically for people with intellectual disabilities, the Money Follows the Person Initiative and the problems with 811’s.

Linda Starnes, thanked the Housing Panel and concluded with the status of members’ efforts to prepare papers in their four priority areas: Education (Least Restrictive Environment), Emerging Technology, Health (Medicaid/EPSDT), and Housing.

Chairman Sweezy then concluded the day with some housekeeping items and recessed until 8:00 AM, Friday, February 16, 2007.