Lee Bezansonⁱ

"Today, there are over 54 million Americans with disabilities, a full 20 percent of the U.S. population. Almost half of these citizens have a severe disability affecting their ability to see, hear, walk, or perform other basic functions of life. In addition, there are over 25 million family caregivers and millions more who provide aid and assistance to people with disabilities." ⁱⁱ Many of these individuals and families use personal assistance goods and services to maintain independent community living. ⁱⁱⁱ

This article will examine some of the historical antecedents of the current climate for the delivery of personal assistance goods and services and explore the incorporation of asset development into future strategies. In particular, the article will describe efforts by two states, New Hampshire and Wisconsin, to develop Living with Independence, Freedom, and Equality (LIFE) Account Savings Programs as a mechanism to promote the quality of life and economic well-being of individuals with disabilities by making asset development an integral part of their home and community-based supports.

Home and Community-based supports, including personal assistance goods and services, are largely provided under the aegis of the Medicaid programs in the various states, most particularly through waiver programs authorized under Section 1915(c) of the Social Security Act. To understand current developments in these programs, including recent incorporation of asset development and savings strategies, it is useful to review briefly the history of the evolution of Medicaid strategies for providing home and community-based supports to individuals with disabilities.

Medicaid was born in 1965 well before Ed Roberts and his peers at Berkeley formed the Rolling Quads and started the independent living movement. At the time of Medicaid's birth, it was generally believed that institutional care was the best alternative for people with significant disabilities. Society regarded disability as a medical problem that needed to be fixed. ^iv In spite of this dismal cultural environment the Medicaid crafters showed remarkable foresight. The enabling Medicaid statute authorized states to furnish to families and individuals with disabilities "rehabilitation and other services to help such families and individuals attain or retain capability for independence of self-care." (emphasis added) ^v

States, perhaps reflecting the larger cultural landscape, ignored this language and initially built Medicaid programs that viewed the world through a medical lens, strengthened institutional bias and drew upon health care professionals as the only acceptable deliverer of long term supports. The resulting system-administered program models were predictably unsatisfactory to those who used the services. Medical insurances would pay for a rehabilitation counselor to teach someone with quadriplegia to dress herself, an activity that could encompass four hours each day. She, however, prefers to have a personal assistant for one hour so that she can get going and head off to her job in her adapted van. Medical insurance didn't cover that-it was neither rehabilitative nor medical.

The earliest models for Medicaid programs for long-term supports for citizens with disabilities and chronic illnesses evinced bureaucratic control and medicalization. For the most part in the early years state Medicaid programs ignored the statutory mandate to promote independence of self-care. The Medicaid agency, with direction from the federal government, created the menu of services, defined disability as a medical issue, created all the rules of the game and expended its resources to pay medical providers of services whether they were institutions (Mental Retardation/Developmental Disability facilities and nursing facilities) or community-based agencies (primarily home health agencies). ^vi Those in control of the institutions and the community-based services were deeply entrenched in their own cultures of self-interest. Rarely, if ever, did the Medicaid agency involve the users of services or even the providers in the design, implementation or evaluation of its programs. These providers collectively constituted the social services network and came to feel entitled to their Medicaid revenues; Medicaid staffers came to call this provider-entitlement. If an individual wanted services he had to fit himself into the mold created by this network and Medicaid regardless of what his needs and preferences were.

This translated into several unwelcome results. Citizens had to eschew full time work and forego any asset development to maintain the low-income eligibility requirements of Medicaid. ^vii They had to accept the services and providers recognized by Medicaid, the vast majority of which were medical in nature. Generally this meant that others determined who would provide personal assistance services and when they would be available. A senior who wanted a daily shower at 6 A.M., a life-long habit, might have to settle for a twice-weekly afternoon bathing arrangement because that was when the approved provider agency had staff available. These factors led many individuals with disabilities to advocate for more choices and control over the services they could receive.

In the past ten years the picture has changed dramatically. As the larger society began to change in response to the disability rights movement(s), Medicaid began to adapt some of its programs to accommodate the expressed desires of the citizens and families being served by the programs. Perhaps the most promising of these efforts to date are the Cash & Counseling Demonstrations. ^viii

Cash & Counseling is a national program sponsored by The Robert Wood Johnson Foundation (RWJF), the Office of the Assistant Secretary for Planning and Evaluation in the United States Department of Health and Human Services (ASPE/DHHS), and the Administration on Aging (AoA). In addition, the Centers for Medicare and Medicaid Services (CMS) reviews states' Section 1115 demonstration or 1915 (c) waiver applications and provides continuing oversight and technical assistance in the waiver process. With the cooperation of these agencies and the National Program Office located at the Boston College Graduate School of Social Work, a three state ^ix Cash & Counseling Demonstration was implemented to compare the Cash & Counseling consumer-directed model with the traditional agency-directed approach to delivering personal assistance services. ^x

Due to the success of the Cash & Counseling Demonstration and Evaluation in Arkansas, Florida, and New Jersey, interest from other states, a supportive political environment, and President George Bush's New Freedom Initiative, The Robert Wood Johnson Foundation, the Office of the Assistant Secretary for Planning and Evaluation, and Administration on Aging authorized an expansion of the Cash & Counseling program that provides grants and comprehensive technical assistance to eleven additional states that are interested in replicating, and in some states expanding, on this Cash & Counseling model. The vision guiding this expansion is the promise of a nation where every state will allow and even promote a participant-directed individualized budget option for Medicaid-funded personal assistance services. The National Program Office at the Boston College Graduate School of Social Work coordinates and directs the replication project.

The Cash & Counseling approach provides consumers with a flexible monthly spending plan that is based on an individualized budget; each consumer or her representative may direct and manage her own personal assistance services and use portions of her allowance to purchase goods and services to meet her own specific needs. In addition, this innovative program offers counseling and fiscal assistance to help consumers manage their allowances and responsibilities by themselves or with the aid of a representative. These main features are adaptable to consumers of all ages with various types of disabilities and illnesses. Cash & Counseling increases consumer satisfaction, quality, and efficiency in the provision of personal assistance services.

In a recent study, Clarifying the Definition of Personal Care, Findings on the Purchase of Equipment, Goods, and Services under the Cash and Counseling Demonstration and Evaluation Cash Option in Arkansas and New Jersey, researchers looked at how participants in the original Cash & Counseling projects chose to expend their allowances when they made the choice to forego some personal assistance services in order to purchase equipment, goods or services that would improve their sense of independence. ^xii

Participants purchased a wide variety of goods and services. Participants reported in focus groups that the items and services they purchased increased their comfort, safety, mobility, ability to perform tasks and independence. ^xiii
" I had a lift installed in my van, so I can be independent." (Arkansas consumer) ^xiv
"[A computer]" aids your mobility; you can contact other people, converse with other people on it, pay bills and stuff like that" (New Jersey consumer) ^xv

On the issue of choice, each participant was able to select the "right" item(s) to meet his needs and preferences. Participants also displayed fiscal responsibility: consumers given control of their budgets could and did shop for the best deal available. Participants maximized their budgets. Some participants went beyond shopping for the best deal and provided their own or another's labor to supplement the value of the purchase. "I got a ramp for my wheelchair. My son didn't charge me the labor." (Arkansas consumer) ^xvi

Participants also used portions of their allowances to ease the burden on their paid and unpaid caregivers. Equipment, goods and services that increase the comfort, safety and well-being of caregivers may provide respite for primary paid and unpaid caregivers as well as encourage their retention. "My daughter takes my mother to church and I give her money for gas" (New Jersey representative) ^xvii

While the Cash & Counseling Demonstration states were completing their work other initiatives were at work that would help states transform their home and community-based programs. In 2001 Congress appropriated new funds that enabled the Centers for Medicare and Medicaid (CMS) Services to offer grants to states to effect permanent and sustainable changes to their programs in support of citizens with disabilities and chronic illnesses. Under these Systems Change Grants for Community Living many states are changing their program models as well as their old approaches to design, implementation and evaluation. In the current iteration the model (at its best) creates collaboration between the Medicaid agency and the users of services. Program design, implementation and evaluation flow from the collaboration. The resulting programs increasingly empower individual users to make choices about the services they need, when the services are needed, where the services will be provided and by whom; in short, it turns the power equation upside down, giving the users of services the control over their allocated dollars.

In this new climate states are increasingly adopting a consumer-direction or self- determination approach that puts citizens and families in the driver's seat instead of providers. Independence Plus waivers and the Cash and Counseling demonstrations have been the more popular of these models. The social service network providers are still available as a choice to users of services but these users have additional options of their own choosing; many choose to train family and friends as their personal assistants. In the Arkansas Cash and Counseling Demonstration one participant put it this way: "I am quadriplegic and when you are in a situation like this, you need someone that you can trust to be there, you know, someone that isn't going to be talking your business all out in public..." ^xviii It is this participant empowerment to make critical decisions about his own life and services that forms the basis of consumer-direction or self-determination. ^xix

In 2004 the President's budget proposed the Living with Independence, Freedom, and Equality (LIFE) Account Savings Program as the next improvement in the home- and community-based system of supports for individuals with disabilities.

Under this new proposal individuals that are participating in home and community-based self-directed programs and who self-direct all of their community supports ^xx would have the opportunity to create savings within their individualized budgets and invest those savings in LIFE Accounts that they would own permanently. These LIFE Accounts would be exempt from being counted as income or assets for purposes of eligibility for federal programs in future years. Individuals with LIFE Accounts could save earnings from employment and accept limited contributions from others. It is unclear whether the individuals could use their LIFE Accounts for any purpose or only for purchases of goods and services that will increase their independence and productivity. ^xxi

While the success of Cash & Counseling and Independence Plus programs in demonstrating both the efficacy of consumer-direction and the positive outcomes of allowing individuals flexible purchasing to meet their personal assistance needs likely informed the LIFE Accounts proposal, the LIFE Accounts proposal moves beyond what is permissible under these programs in several important respects:

1. individual ownership of accumulated savings and expanded latitude on what may be purchased with accumulated funds
2. commingling of Medicaid funds with income from other sources
3. expending Medicaid for items or services not specifically related to meeting medical need
4. permanent exemption of the funds from being counted for purposes of eligibility and benefit levels in other federal programs

In support of the President's proposal the 2004 CMS Real Choice grants solicitation included a request for proposals from the states to develop LIFE Account models. Two states, New Hampshire and Wisconsin, bid successfully. Each proposed to complete a feasibility study and then design model(s) for the creation of LIFE Account programs. These grantees are completing their feasibility studies and are now in the early stages of LIFE Account Savings Program design. The grantees have concluded that the development of a LIFE Accounts program as originally conceived will require federal enabling legislation. In the absence of such legislation the grantees are working to identify how closely they can approximate the LIFE Accounts concept under existing law and policy.

Toward this end they are engaged in an appraisal of currently available Medicaid-based models that might form the basis for a modified LIFE Accounts program, including consideration of the two new home and community-based State Plan options created by the Deficit Reduction Act of 2005 (DRA). States currently have six options for developing consumer-directed home and community-based programs that could accommodate LIFE Accounts: Section 1915(b) waivers, Section 1937programs, Section 1115 Demonstrations, Section 1915(c) waivers, Section 1915(i) waivers and Section 1915(j) waivers. This article examines only the latter four options due to space limitations. See the September '06 EQUITY Tip of the Month for more information on these different options.

Until passage of the Deficit Reduction Act of 2005 states used the Section 1115 Demonstration authority and the Section 1915(c) waiver authority to develop programs in which participants could self-direct some or all of their support services. Under the DRA states may provide consumer-directed services under new state plan options. It is less clear if both of these new options may be used to accumulate savings for purchases of other goods and services though the Section 1915 (j) option (which allows the Cash & Counseling option without a waiver) clearly does.

The grantees are looking for the model that will provide participants with consumer-directed personal assistance goods and services and permits some asset development for the purpose of purchasing "other goods and services" that promote independence and productivity.

The policy changes that have enabled the Independence Plus and Cash & Counseling programs to offer individuals the opportunity to manage a flexible budget and purchase both personal assistance services and other goods and services that substitute for them also enable the development of a modified LIFE Accounts program in which individuals may save for purchases that will promote independence and productivity. If such an approach is taken by the grantees it will be important to clarify with CMS the scope of permissible purchases for which savings may be accumulated and the maximum period over which such savings may be accumulated.

Because there has been no federal legislation creating LIFE Accounts savings programs, the next level of analysis for the LIFE Accounts grantees requires a crosswalk to programs that include financial eligibility criteria to insure that the model doesn't impact an individual's eligibility for other important benefits. At a minimum the crosswalk should include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Food Stamps, Fuel Assistance and Section 8 housing.

A second crosswalk with other asset development initiatives including Individual Development Account initiatives (IDAs), Plan for achieving Self Support (PASS) accounts, 1619(a) and (b) accounts, Student Earned Income Exclusion (SEIE) and Medicaid Buy-In programs to insure that the LIFE Accounts model would not create an adverse impact on the opportunities those programs offer to individuals. Finally, it will be useful to examine the Internal Revenue Code for any tax implications of LIFE Accounts.

Whatever the model New Hampshire and Wisconsin create for a LIFE Accounts savings program it is likely to move the concept of asset development incrementally forward. Given the research findings in asset development to date this is likely a good public policy outcome that will make a positive contribution in ongoing efforts to create an environment that supports full community inclusion for everyone.

iLee Bezanson, Associate Research Professor at the Boston College Graduate School of Social Work, is the Director of the Community Living Exchange Collaborative Clearinghouse that manages the HCBS.org website and she is a member of the management team for the ILRU Technical Exchange for Community Living. She provides support to Cash & Counseling states as a part of the National Program Office at Boston College.

She was formerly the National Project Director of the HCBS Resource Network and served as Co-Chair of the HCBS Resource Network Board. She was a faculty member for the national Olmstead trainings sponsored by ILRU. Ms. Bezanson is a former Medicaid Director for the State of New Hampshire.

Both a psychiatric nurse and an attorney by training, Ms. Bezanson has a broad and eclectic background in the human services field. She has been the Director of a Senior Citizens Law Project, an Assistant Attorney General for the state of Connecticut, a member of the Ethics Committee for the federal Bar in Connecticut, a Charge Nurse in a chemical dependency unit for adults with dual diagnoses, and the Legal Coordinator for the state of New Hampshire Division of Human Services.

She served on the Executive Committee for the National Association of State Medicaid Directors (NASMD) and as Chair of the Centers for Medicare and Medicaid Long Term Care Technical Advisory Group. She was a founder of the New England States Consortium Systems Organization (NESCSO) and served on its Board of Directors. She is a former member of the Board of Directors of Granite State Independent Living.

iiNew Freedom Initiative, Executive Summary

iiiMedicaid is the primary payer for these services unless the individual can purchase them privately. These are not covered by traditional medical insurance.

ivGerbon DeJong, "Independent Living From Social Movement to Analytic Paradigm," Archives of Physical Medicine and Rehabilitation 60, October 1979.

v42 U.S.C. 1396

viPolicy direction from the federal government came not only from the Health Care Financing Administration but also from the Social Security Administration through its SSI and SSDI policies.

viiOne promising and noteworthy exception exists in states that have exercised their option to create a Medicaid Buy-in program in which an individual may work and purchase his/her Medicaid coverage through payment of a premium. In some of these Buy-in programs modest asset accumulation is also permitted without loss of eligibility.

viiiA second effective approach is the use of Independence Plus waivers as sanctioned by the Centers for Medicare and Medicaid (CMS).

ixArkansas, Florida and New Jersey

xDale, S., Brown, R., Philips, B.;Schore, J., & Carlson, B.L. (2003, November 19). The Effects of Cash and Counseling on Personal Care Services and Medicaid Costs in Arkansas. Health Affairs Web Exclusive, Retrieved May 4, 2005, from http://content.healthaffairs.org/cgi/content/abstract/hlthaff.w3.566.

Foster, L., Brown, R., Philips, B., Schore, J., & Carlson, B.L. (2003, March 26). Improving the quality of Medicaid personal assistance through consumer direction. Health Affairs Web Exclusive, Retrieved May 4, 2005, from http://content.healthaffairs.org/cgi/content/abstract/hlthaff.w3.162v1

xi Alabama , Iowa , Kentucky , Michigan , Minnesota , New Mexico , Pennsylvania , Rhode Island , Vermont , Washington , and West Virginia.

xiiLoughlin, Dawn L.; Mahoney, Kevin J.; Meiners, Mark R.; Sadler, Michelle D, Clarifying the Definition of Personal Care,Findings on the Purchase of Equipment, Goods, and Services under the Cash and Counseling Demonstration and Evaluation Cash Option in Arkansas and New Jersey.

xiiiId. at 56.

xivId.

xvId at 57

xviId.

xviiId.at 44

xviiiEckert, J.K., et.al., The Cash and Counseling Qualitative Study: Stories from the Independent Choices program in Arkansas, January 2001, p. 91.

xixThe terms consumer-direction and self-determination are used differently by different groups and individuals; these distinctions do not affect the content of this article.

xxThe requirement that individuals self-direct all of their community-based services arises from language in the 2004 grant solicitation. If this requirement is interpreted strictly it will limit the numbers of self-directing individuals that will be eligible to participate in a LIFE Accounts savings program because many individuals have individual budgets that include a mix of services only a portion of which they self-direct. For example, an individual might self-direct his personal care workers but also have a professional nurse provide a service that is not self-directed. Since the solicitation contained a caution that all of the information presented represented LIFE Account design elements that are under consideration only and may differ from any future Congressionally-authorized LIFE Account savings program, the barrier created by use of the word "all" may yet be eliminated

xxiSee testimony of Dennis Smith, April 2004 retrieved June 29, 2006 at http://www.cns.hhs.gov/apps/testimony.asp?Counter=1011

xxiiId.

xxiiiIn theory a state could also use a state plan personal assistance program but this option is not presented here because it lacks in flexibility in comparison with the other options.

xxivArguably this creates a distinction without a difference because it would simply rename "other goods and services" as modified LIFE Accounts savings.