For detailed presentation, with graphs, click here.

VOR Statement to the Medicaid Commission

November 2006

Dispelling Medicaid Myths

 I.    INTRODUCTION

 My name is Robin Sims.

I am the First Vice President of VOR, a national nonprofit advocacy organization for people with mental retardation and their families. I hope that by now, VOR and our perspective is familiar to you. You have heard from VOR representatives in Atlanta, Georgia; Irving, Texas; and twice before today in Arlington, Virginia.

As with the VOR representatives who have testified before me, I come today as a volunteer. Our support for VOR’s perspective is motivated by our common link: We all have family members with mental retardation who need Medicaid services.

In my case, I have 2 children with disabilities. Although their needs are very different, both are thriving in their own way Heather is 23 years old and has a regressive form of autism. She has lived in an ICF/MR in Clinton, NJ called the Hunterdon Developmental Center for the past 8 years. She needs constant supervision and assistance with all her self- care needs. She has violent outbursts and requires the expertise of a trained staff to keep her from hurting herself and others. While she has made some improvement since her admission to Hunterdon, it is due to the consistency and predictability of the environment. Without her Medicaid-funded ICF/MR placement she would not have survived.  Benny is now 20 years old and has Fragile X Syndrome. As he ages out of school services it is unknown what kind of work or programming will be appropriate for him. His father and I have seen many other kids like Benny with no services after transition and the results have been from severe depression, regression and even death.

II.    MY FOCUS TODAY – WHAT INSTITUTIONAL BIAS?

My focus today will be the myth of an institutional bias, with regard to Medicaid expenditures, for persons with mental retardation and developmental disabilities.

It is critically important to me and VOR that each Commissioner understand the very different populations receiving Medicaid long-term care and do not, in addressing an alleged bias, inadvertently negatively impact people with mental retardation who have nothing to do with the institutional bias.

VOR has a legitimate reason to be concerned. At a recent meeting, a member of this Commission stated publicly that the Commission had agreed unanimously to eliminate the institutional bias.

I’m hopeful that my brief remarks today, along with VOR’s written presentation received by Commissioners in advance of this meeting, will help explain why the allegation of a Medicaid institutional bias for people with MR/DD is simply not true.

There is no Medicaid “Institutional Bias” for Persons with Mental Retardation and Developmental Disabilities (MR/DD)

The origin of this myth relates to two factors. 

The first is the historical combining of figures for the nursing facility program with the ICF/MR program to comprise a total figure for “institutional spending.” This co-mingling of people and services throws together people with MR/DD and the services they require with the much larger physically-disabled demographic -- including the elderly -- and the services they require. 

The second is labeling all “institutional” services as mandatory and all community services as “optional.”  As a matter of fact, nursing facility care is mandatory but ICF/MR care and community care are both optional Medicaid services.

Separating out ICF/MR funding from nursing home care “institutional” figures and comparing just the funding for people with MR/DD leads to dramatically different conclusions.

A) ICFs/MR comprise only 20% of total Medicaid “institutional” spending. Nursing Facilities (NFs) (also called “nursing homes”) account for 80% of total Medicaid “institutional” spending.   

B) Furthermore, when funds for persons receiving MR/DD services are separated out, only 25.8% of total Medicaid dollars goes to ICFs/MR (MR/DD institutions) while 74.2% is spent for MR/DD community-based services. Stated another way, we spend almost 3 times as much on Medicaid home and community-based services, and compared to MR/DD institutional services.

C)  From 1977 to 2004, overall fiscal commitment (“fiscal effort”) to community programs, as measured by the total amount spent from state and federal sources for MR/DD services per $1,000 of citizens’ personal income, increased by 486%. In contrast, institutional spending declined by 51% (Figure 3).

A note about Medicaid expenditures

On a related note, it is important also for Commission members to recognize that ICFs/MR are not the cause of rising Medicaid costs. The ICF/MR program is a tiny and falling percentage of all Medicaid funding and a good investment for both the federal government and the states to care for their most needy citizens. I know; my daughter is a benefactor of the good care received in a state ICF/MR. There is no doubt in my  mind that the availability of ICF/MR supports saved her life and brought sanity and peace to my family home.

Consider these figures, relating to Medicaid expenditures. From 1995 through 2005 –

Medicaid increased by 98.28%

Community increased by 267.5%

ICF/MR increased by only 25.9%

III.    CONCLUSION

The myth of an “institutional bias” in Medicaid – spending more on institutional services than community services – coupled with Medicaid “rebalancing” initiatives, as applied to services for persons with MR/DD, can have dangerous consequences for our most fragile citizens.

Federal and State efforts to “rebalance” the system by increasing community supports at the expense of “institutional” (including ICF/MR) options, places at risk the ICF/MR option. ICFs/MR may become uneconomical and extinct, risking the health, safety and very lives of people with severe and profound mental retardation.

The most fragile people of the MR/DD population are not going away. Their specialized care needs will continue to exist at the same or greater level into the future. Their care will continue to be expensive regardless of where they are being served; some studies suggest the cost of care could be higher in community settings for the most disabled and medically-fragile of our society.

 While there is an ongoing need to expand community-based options, it is short-sighted and morally indefensible to do so at the expense of an exceedingly fragile population.  

Thank you for your time today.

VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007

877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com