Employment Support Institute School of Business Virginia Commonwealth University   http://www.workworld.org/ mailto:WorkWORLD@vcu.edu

 

 

Feedback about this article is welcome.  Please send suggestions or comments to:

MLHhill@vcu.edu

 

 

Self-Determination, Funding Priorities, and WorkWORLD
Benefit and Work Incentive Decision Support System

 

Spring 2004

 

Mark L. Hill, P. David Banks, David J. Ruth, Robert M. Carlson, James L. Troxell

 

 

The rhetoric of the last decade of services for individuals with disabilities has been dedicated to the advancement of consumer-driven services and the provision of increased consumer control over the service dollars in order to allow more self-determination.  However, disability policy is so complex that very few people can effectively make informed decisions without expert advice; disability policy is not unlike the federal and state tax codes in this respect. Many expert tax advisors are available to the public to assist them through the maze, and most of them are fee for service third-party advisors.  People with disabilities, however, have very few expert advisors to assist them and most advisors are employed or salaried by the government.  It is not a surprise then, that people fear getting bad advice and/or disclosing information that might harm their benefit situation.  Subsequently many people that could be more self-sufficient do not choose to risk attempts at greater independence.

 

Can we truly increase personal self-determination without simplifying policy interpretation and redesigning the system to focus on building increased individual self-support and financial independence and growth? 

 

Most people close to our national disability policy system would say “no”.  In this country, unless individuals have the typical incentives to work–to make higher wages, to save for the future, and to enjoy basic spending capacity–they are not full participants in society and certainly not self-determining their own lives.  No matter how hard we try to deny it in our paternalistic disability service system, personal financial responsibility in this country, at least, is the “ticket” to self-determination.  Improvements to policies and procedures in the established service delivery system have been made, but they are nominal in relation to the scope of the problem and the potential for positive, new possibilities for self-determination by people with disabilities.  Using tools to leverage the transition to self-support and self-determination is needed.  Could a new emphasis on measurement of self-support outcomes and provision of WorkWORLD decision support technology, with expert advise when needed, for individual decision-making help?   

 

Legislators spurred on by disability advocates and others have courageously started to overhaul the system with the “Ticket to Work and Work Incentive Improvement Act” of 1999.  In fact, many Social Security Administration (SSA) Work Incentives that could directly empower recipients of Supplemental Security Income (SSI) and beneficiaries of Disability Insurance (SSDI) have been available since the 1970's, but only a small percentage of those that could use them actually do.  The result is unrealized self-support outcomes for people with disabilities.  For example, many people receiving SSA Disability Insurance could benefit from use of a PASS while becoming eligible for SSI and Medicaid. 

 

Work Incentives* such as PASS (Plans to Achieve Self Support), Blind Work Expense (BWE), 1619a,b, and IRWE (Impairment Related Work Expenses), give the individual with a disability the power to obtain the supports they need to achieve employment, health care, and net income goals.  [click this link to see Description of work incentives at the end of this article.]

 

Figure 1 shows that nationally only 3/10ths of 1% of SSI recipients aged 18-64 had active PASSes or IRWEs in September of 1995.

 

 

Figure 2 shows that eight years later in September of 2003 the number of active PASS plans totaled 1785, down 84% from the 10,583 total reported in September 1995. 

 

 

Further, since the total number of people in September 2003, age 18-64 receiving SSI had grown by about 300,000 since 1995, it becomes very apparent that there have been serious systemic forces discouraging people from taking advantage of these empowering programs.  People trying to improve the system know that lack of knowledge about work incentives, lack of accurate individualized information, and fear of losing benefits because of demonstrating work capacity are a few of the major causes.  The Ticket to Work and Work Incentive Improvement Act has provided the Social Security Administration a rejuvenated infrastructure to begin to deal with these barriers.  However, to understand the underutilization of self-support resources, we need to look outside SSA for other disability system disincentives.

 

Employment Support Institute (ESI) staff have extensive experience training people in local communities about self-support resources.  ESI also responds to help requests by telephone and email.  Most direct requests for help come from consumers and family members; professionals represent about 1/3 of requests.  ESI also tracks visitors to its WorkWORLD website (http://www.workworld.org), and to the Help/Information System there (http://www.workworld.org/wwwebhelp/basic.htm).  Figure 3 shows the growth in Help/Information System pages visited through March 2004.  There were 18,000 individual person visits in March, demonstrating how many people are seeking benefit and work incentive information.

 

 

As of March 2004, over 2850 web visitors had signed up for our WorkWORLD email list and requested notifications about updates to WorkWORLD.  People on the list maintain their own email information, self-selecting “YES” or “NO” to the question “I would like to be notified of software update availability.”  This web activity and other ESI staff experiences helping people directly confirm that there is a substantial need for additional “expert” benefit planning assistance.

 

We believe the most common justification from professionals and service providers for lack of work incentive use is that Work Incentives are perceived by many to be too much trouble to arrange and not worth the benefits.  We need to ask -- Not worth it for whom; too much trouble, for whom?  From the paternalistic service system perspective, it is true that the Work Incentives are not seen as a valuable source of resources for the system to support individuals with disabilities.  The work incentives primarily benefit the individual with disabilities, adding personal investment possibilities, increasing net income, reducing the risks of demonstrating work capacity, allowing greater resources to accumulate, and enabling other individually empowering outcomes.  These outcomes may not be fiscally rewarding for organizations, but for the individual they may be the most important tool we have to approach true self-determination through increased self-support and personal financial investment and growth. 

 

School age work incentive data is even more dramatic.  In September 2003, there were only five PASS plans active for people under age 18, in the entire country (SSA, SSI Recipients Who Work Sept 2003).  A student age 15 or older who has a work goal can submit a PASS to SSA.  The PASS specifies the work goal, lists the expenses necessary to achieve it, and earmarks existing income and/or assets for the expenses.  Expenses can include such things as education, job coaching, assistive technology, and transportation.  If SSA approves a PASS, it determines eligibility for SSI without counting the earmarked funds, which can include parental income and assets deemed available to the child.  SSI benefits then replace most or all of the earmarked funds.  Leaders in Federal, State and local Departments of Education need to assess their practices that miss helping students with disabilities to access and use such a powerful work incentive.  Funding should be directed to assist students and families directly to learn and take advantage of their personal benefits and work incentives.

 

 

Who is the Customer?

 

It is no secret that the predominant disability system, outside of SSA, currently pays service providers to support and, in essence, to protect persons with disabilities.  The dollars exchanged from the system to service providers, while never enough, are certainly much more than the small fees for services paid by the consumers themselves.  It is well known that the primary customer, in non-SSA disability services, is the service system itself, and not the individual with a disability.  Most community-based disability service systems are paternalistic in nature.  The predominant community provider-focused service system, Medicaid, was legislated to support and protect the greatest number of people at the least cost and labor possible. 

 

Alternatively, the new world of consumer driven services and Work Incentives use, while labor intensive at least initially, benefits the consumer in major life changing ways–but the beneficial effects on the predominant system or the service provider are not directly evident.  The number of people achieving self-support as a result of public funds targeted for that purpose is not currently a common performance outcome.  Employment service systems rarely fund directly the empowerment of the individual by assisting them to understand and use their individual benefits and work incentives.

 

Too often, this “chore” responsibility is passed from one professional to another with most people afraid to offer advice that might “hurt” the consumer.  Current practice shows most professionals deferring individual and benefit advice to the Benefit Planning Assistance and Outreach (BPAO) staff funded by the SSA.  Unfortunately, there are far too few of these personnel to give detailed individually-validated ongoing consumer advice to the millions of unemployed SSA recipients nationally.  Indeed, the BPAO data system reveals that almost half of the consumers who contact a BPAO request "Intensive Benefit Support" services (“Benefits Analysis and Advisement,” “Benefits Support Planning,” and/or “Benefits Management”), yet more than half of them receive less than three hours and over two-thirds receive less than four hours total cumulative service time (VCU BARC, 2003).  Others close to the consumer must be added to the list of knowledgeable benefit planners.  Teaching paid and unpaid advocates to use WorkWORLD decision support is one method of adding knowledgeable people; teaching people how to assist people to use their benefits and work incentives is one of the primary missing components of a successful employment service system.

 

The ESI team believes the major problem defeating the potential of Work Incentive use today is that the service provider system, outside SSA, is neither expected to nor rewarded for focusing on empowering individuals to self-support and to achieve financial and social health.  Instead, current fiscal practices make the primary customer the services funding agency with little emphasis on individual work incentive based empowerment.  Current fiscal practices value protection, hours worked, and maintaining the delicate balance of government benefits and service dollars/fees.

 

Fifty percent of SSI recipients receiving wages are labeled persons with mental retardation, but they comprise only about 24% of all SSI recipients aged 18-64.  Only 8.7% of 18-64 year old SSI recipients receive earnings and 55% of those working make under $200 a month, 66% make under $500 a month (SSA, September, 2003).  The “system” of support providers are not well rewarded for assisting people to achieve a “living” wage and higher net income.  In fact many providers, not knowing how much a person can make before they lose benefits, often advise workers to be cautious about making “too much money.”  The opportunity lost of unrealized income is huge.  Although current legislation allows practices to shift to a more consumer driven one, for real progress to be made, Federal, State and local leaders must take risks and explore the potential of redirecting resources to work incentives and other self-support/self-determination strategies.

 

Financial systems supporting service organizations lack incentives to empower their consumer customers!

 

Employment Support Institute (ESI) staff at Virginia Commonwealth University, while encouraging community service providers to help people with disabilities use their SSA Work Incentives, often hear that the purchasing power of individuals is “insignificant” when compared to that of the State agencies from which they receive most of their funding.  Most State agencies serving people with disabilities, in turn, get substantial funding through Federal block grants.  It is not surprising when administrators pay more attention to the big spending customers (State and Federal purchasers) rather than to a large number of unknown individuals who each have a relatively small source of SSA or other consumer-driven funding for employability supports.  The individual loses power and ambition, unless individual power and ambition become the funded goals of the employment service system.

 

States’ primary disability service systems, Medicaid and Vocational Rehabilitation, predominantly fund large service provider organizations where individuals with disabilities are the indirect secondary customers.  To obtain budget increases, service providers become very responsive to the buyers that hold the purse strings.  In this customer hierarchy, the satisfaction of big spenders is high on the service providers' list of priorities, while the satisfaction of the individual with Work Incentive or other consumer-driven money takes a back seat.  The individual’s customer power is devalued and the person learns little about how to be more self-sufficient, unless services are funded that put consumers in control of work incentive funds.

 

Policy makers, parents, social policy advocates, and people with disabilities often call for "voucher systems” or consumer-driven budgets, systems in which the individual is given the funding to purchase needed services and the authority to choose among providers.  Many see consumer-driven budgets as a way to empower the consumer directly.  Many SSA Work Incentives directly empower the recipient, and in effect are like consumer driven budgets–yet these incentives are grossly underused (Figure 1, 2, Table 1).

 

Nationally, the lack of use of the PASS is a stunning reminder of the lack of investment in self-determination efforts by state and locally managed disability programs.  The number of people in a state with active PASS and other Work Incentives might be one of the best measures of that state’s emphasis on self-determination and independence for people with disabilities.  Community service personnel often report to ESI staff that helping a person to access and manage their benefits and Work Incentives is a tedious and unrewarding experience.  Delays in helping a person get needed information; delays in getting agency approvals to activate Work Incentives, helping the person deal with significant others about the plan, and time actually helping the person implement and modify the plan long term are not directly rewarded.

 

Vocational Rehabilitation, School Systems, Community Service systems and Federal demonstration funds must be redirected to pay for the time it takes to assist people directly with understanding and using their personal benefits and work incentives.  Some Vocational Rehabilitation Counselors allow job coaches, for example, to include WorkWORLD policy analysis in their supported employment services.  Some coaches find it extremely valuable to bring a new person’s family together to look at the WorkWORLD outputs so that everyone involved has reduced fears of increased earnings or losing health care.  The successful empowerment of individuals includes bringing key stakeholders together to achieve a consensus about the safety and value of achieving higher earnings.

 

Unfortunately most community agencies have abandoned helping people use their Work Incentives because they are not directly funded to perform the service.  Individuals do not learn how to persevere to achieve their own personal resources for self-support.  The individual’s innate ambitions for a higher standard of living are progressively extinguished.

 

Although Federal legislation encourages States to build vendor and service provider heavy systems, there are solutions.  When creative leaders initiate programs that empower the individual directly they help them achieve a more appropriate “power” balance.  Federal, State and local leaders must begin to invest in self-determination efforts that include assistance with access and management of benefits and work incentives.  Doing so shifts the locus of control from an over-empowered “system” by redistributing some of the purchasing power and associated decisions to the individual with a disability and his/her trusted advisors.  New and redesigned strategies and incentive structures should focus on assisting individuals to achieve their own safe paths to higher net income and access to health care and not just on building larger service system infrastructures.  Nerney (2001) points out the value of shifting from a Medicaid provider system to a more consumer directed system.  The Center for Self-Determination’s (CSD) “Implementing Freedom through Individual Budget Planning” initiative (Nerney, 2002) teaches consumers and their trusted advisors to expand options, “stretch the dollar” and generally benefit the system and person by offering greater flexibility in use of public monies.  Policy exists now, for example, the Consumer Driven Waiver Services under Medicaid, that would allow state leadership to shift funds toward individual control.  More individuals should be learning how to build their own paths to self-support and a higher standard of living. 

 

Positive Outcomes for the Individual

 

As a service system shifts more power to assist the individual with their personal benefits and work incentives, so too should the measures of success shift.  New outcome measures might evaluate:

 

1) Improvements to individual and family net income (not gross wages);

 

2) An individual’s and/or his/her trusted advisor’s knowledge about options and choices;

 

3) If higher earnings paths selected are safe and avoid net income cliffs or loss of health care;

 

4) Work incentive use: number, duration, value and outcome;

 

5) The number and quality of relationships with non-paid significant others;

 

6) The amount of service dollars redirected toward assisting people with their personal benefits and work incentives, (e.g. VR/Medicaid promoting benefit analysis and supporting use of work incentives under supported employment services)

 

7) Evidence of potent incentives for unpaid staff, such as volunteers, family, and friends, to assist a person to achieve self-determination and self-support, e.g. WorkWORLD training for consumers directly and for unpaid community members who are likely to advocate or assist people with disabilities.

 

The purpose of shifting to self-support is not to save taxpayers money, although research appears to say it does (Head, 2001).  Rather, the purpose is to improve people with disability’s quality of life and standard of living.  The Individual gets a “quality” life and a “ticket to self-determination.”

 

Positive Outcomes for the System

 

As an attempt to estimate a portion of the opportunity lost for individuals to better control their own destiny, let’s assume state and local leaders initiate creative strategies that achieve just 3% of SSI recipients having active PASS plans that set aside an average of $400 per month for employability supports.  The net gain in total resources focused on gainful activity and self-support would be over $548 million per year.  (3,811,479 * .03 * 400 *12 =  $548,852,976).  What if we could achieve 5 or 10% of SSI recipients averaging $500 per month for achieving employment goals with a PASS?  (78% of PASSes set aside more than $299 per month in September 2003).

 

Adding 1 billion dollars for consumers to self-direct plans to achieve self-support is a realistic goal under current rules and regulations.

 

The potential infusion of funds from SSA to individuals to focus on self-support could generate substantial savings to the taxpayer as well.  As people begin to recognize there are safe ways to achieve independence and a higher standard of living through earnings and equity growth consumers and taxpayers alike benefit.  Current SSA rules, when understood fully, allow the great majority of beneficiaries and recipients to find reasonable paths to independence.  Even if people simply achieve “greater” independence (and not full independence) by achieving earnings and equity growth, both the consumer and the taxpayer benefit financially.  New awareness and careful management of current SSA rules can break the long misunderstood potential of SSA beneficiaries and recipients.

 

The PASS is only one Work Incentive compatible with self-determination initiatives; there are many.  Because most States lack creative strategies that promote self-determination and use of individual benefits and Work Incentives, people with disabilities are not learning to create their own paths to self-support.  Taxpayers also miss this opportunity and lose when individuals do not learn how to self-support themselves or are not allowed to determine their options.  The cost of creating dependencies for society is an unknown but important factor to consider as system leaders make their choices about investing in policies and projects that increase self-determination.

 

In addition to SSA’s PASS, there are other consumer-driven programs and Work Incentives, such as the Consumer Directed Services Waiver under Medicaid, that allow States to balance the locus of control between system and individual (Nerney 2002).  Medicaid Waivers allow States to "waive" some regulations concerning Medicaid services in order to experiment with innovative services to a limited number of people.

 

On May 9, 2002, as a part of President George W. Bush's "New Freedom Initiative," the Department of Health and Human Services (HHS) issued a press release describing the unveiling of two new waiver templates that promise to help states better use the Medicaid program to enable people with disabilities to choose services in their own homes and communities.  HHS Secretary Thompson announced that HHS is making information on available technical assistance on community-integration issues more readily accessible through a new Web-based resource.

 

HHS's new "Independence Plus" waiver templates give states tools to create programs that will allow people with disabilities and their families to decide how best to plan, obtain and sustain community-based services, placing control into the hands of the people using the services.

 

The electronic templates provide guidance to states on how to develop these programs within existing federal requirements using a streamlined application process, which will ultimately result in faster federal approval of state proposals.  Similar programs have been shown to promote cost-effective and flexible solutions for care while meeting the individual needs of people receiving services.

 

The waiver templates recognize the essential role of the family or individual in planning for and purchasing health care services while, in many cases, delaying placing the individual in an institution or other high-cost out-of-home facility.  The templates fulfill just one of the commitments that HHS made to promote community integration in the report "Delivering on the Promise," which Secretary Thompson delivered to the President on behalf of nine federal agencies in March 2002.

 

The templates were developed by HHS' Centers for Medicare & Medicaid Services (CMS), the federal agency that administers the federal-state Medicaid program.  More information (including the actual templates) is available at  http://cms.hhs.gov/independenceplus/.

 

Housing rent subsidies, 1619(a,b), Food Stamps, and the Student Earned Income Exclusion are other resources that the individual might access.  The first important data set to emerge from the self-determination movement was compiled by Michael Head, Michigan's self-determination project manager (Head, M., 2001).  Head's analysis of the pre and post "costs" associated with 285 individuals who moved into a self-determination approach from typical human services is compelling: $694,663 was "saved" over pre self-determination expenditures.  Head's analysis also noted that the higher the previous "cost" for an individual the more the savings.

 

Our State and Federal support systems must pay more attention to earnings and Work Incentive based solutions, shifting Medicaid funding to consumer directed services, and helping people access other individual resources to foster greater self-sufficiency instead of continuously expanding top down provider dependencies.  Strategies for simplifying complex policies and providing knowledge based decision supports should become part of the State’s arsenal for improvement.

 

Overhauling the paternalistic system: Start with a Performance and Outcome Measurement System Focused on Increasing Personal Financial and Social Health

 

Tight State budgets for employment supports should create a growing awareness of these individually-accessed resources.  The untapped potential for assisting people to achieve higher net income and self-support should prompt state and local leaders to implement strategies which promote these self-determination options.  Although current legislation (TWWIIA, 1999) is designed to enhance and improve SSA Work Incentives, State, Federal, and local initiatives are a long way from achieving even 1% of SSI recipients using PASS.  SSA’s “Ticket to Work” program rewards both the person with a disability and an employment service provider, an Employment Network (EN), for collaborating to achieve at least Substantial Gainful Activity (SSA Handbook, 2004 web version).  However, unless state and local leaders initiate concurrent and substantial self-determination efforts that include assistance to access and manage the individual’s benefits and Work Incentives, the “Ticket” program may become yet another underutilized Work Incentive.  State agencies must recognize that the SSA BPAO system is inadequate to meet the level of need for individualized planning and ongoing support of consumer self support skills.

 

To reduce a person’s fear of losing benefits they need a comprehensive assessment of their current policy situation and clear steps to a more independent future.  When the person chooses the steps and is confident the steps are safe, independence becomes much more likely.  If Employment Networks (EN) receiving tickets or the individual providing a ticket do not fully agree on a safe path to independence, both parties will likely not achieve the full benefit that is possible under the aggressive Ticket to Work legislation.

 

The actual use of empowering benefits and work incentives and consumer driven budgets can be tracked to measure how well Federal, State and local agencies are doing on the self-determination front.  Nerney (1998) maintains that self-determination is dependent on four basic principles:  freedom to develop a personal life plan, authority to control a targeted sum of resources, support to obtain personal goals, and responsibility for contributing to one's community and using public dollars wisely.  Principles of self-determination establish that people with disabilities are the planners and decision-makers in all daily living activities, such as working and taking financial control of service resources and personal income (Southern Collaborative on Self-Determination, 1997). 

 

Recent data on PASS use helps to show both the future potential and the current lack of investment in helping individuals become more self-sufficient.  Table 1 shows Active PASS use by State.  The states are sorted by percent of SSI recipients age18-64 with an active PASS.  Detailed descriptions of the Work Incentives can be found at the end of this article in the “Description of Work Incentives” section.

 

Table 1: Utilization of PASS by State sorted by Percent of SSI 18-64 with an Active PASS

 

	STATE/DC	Active Pass Plans Sept. 2001		Active PASS Plans Sept. 2003	Total SSI 18-64 2003	Percent working 2002	Percent Working 2003	Percent with PASS 2001	Percent with PASS 2003	Change % of all 18-64 with PASS 2001-2003
1	Montana	20		29	10499	17.64%	16.33%	0.195%	0.276%	41.5%
2	Vermont	20		15	9044	13.26%	12.01%	0.228%	0.166%	-27.3%
3	Minnesota.	75		69	46124	21.31%	20.33%	0.171%	0.150%	-12.6%
4	South Dakota	4		12	8025	27.45%	26.38%	0.050%	0.150%	200.6%
5	Wisconsin	98		88	59901	18.77%	17.16%	0.172%	0.147%	-14.4%
6	Maine	23		33	23336	10.59%	9.84%	0.105%	0.141%	34.5%
7	North Carolina	98		147	111369	7.53%	7.04%	0.091%	0.132%	44.3%
8	California	371		520	576717	7.89%	7.32%	0.068%	0.090%	32.5%
9	Idaho	5		12	14121	13.23%	12.03%	0.038%	0.085%	121.9%
10	Oregon	22		32	38449	11.10%	10.27%	0.061%	0.083%	36.6%
11	Iowa	37		25	30180	23.48%	22.13%	0.126%	0.083%	-34.2%
12	Nebraska	11		12	15277	20.53%	19.76%	0.075%	0.079%	5.2%
13	Kansas	16		19	25779	16.68%	15.35%	0.064%	0.074%	14.7%
14	Massachusetts	43		74	106945	10.09%	9.07%	0.041%	0.069%	70.6%
15	Hawaii	8		8	12013	6.50%	6.29%	0.070%	0.067%	-5.1%
16	New Hampshire	11		6	9532	14.77%	13.27%	0.125%	0.063%	-49.6%
17	Washington	41		43	72659	8.70%	7.88%	0.059%	0.059%	0.7%
18	Wyoming	3		2	4140	20.12%	18.91%	0.072%	0.048%	-32.7%
19	Nevada	8		8	17432	8.77%	7.76%	0.052%	0.046%	-11.3%
20	Alaska	5		3	6737	10.14%	9.07%	0.082%	0.045%	-45.6%
21	Rhode Island	2		8	18464	9.81%	9.20%	0.011%	0.043%	288.7%
22	Michigan	57		63	148695	10.87%	9.75%	0.040%	0.042%	6.9%
23	Kentucky	32		46	119688	4.26%	3.93%	0.027%	0.038%	40.4%
24	New York	143		128	342099	8.99%	8.88%	0.042%	0.037%	-10.7%
25	North Dakota	2		2	5437	26.21%	24.63%	0.037%	0.037%	-1.4%
26	Florida	78		65	198748	6.20%	5.71%	0.042%	0.033%	-21.3%
27	Arizona	15		17	54096	6.90%	6.30%	0.030%	0.031%	5.0%
28	Maryland	17		16	53464	11.24%	10.73%	0.033%	0.030%	-8.2%
29	Arkansas	13		15	51070	7.18%	6.81%	0.027%	0.029%	10.2%
30	Colorado	10		10	34643	12.87%	11.61%	0.029%	0.029%	-0.4%
31	Utah	5		4	14327	16.08%	15.08%	0.036%	0.028%	-22.4%
32	Connecticut	10		9	33638	12.18%	11.44%	0.031%	0.027%	-12.5%
33	Alabama	21		23	98784	4.08%	3.86%	0.022%	0.023%	4.1%
34	New Jersey	24		18	80660	10.15%	9.63%	0.030%	0.022%	-26.6%
35	Missouri	29		17	77729	9.98%	9.39%	0.038%	0.022%	-42.9%
36	Virginia	28		17	78088	8.73%	8.16%	0.037%	0.022%	-40.8%
37	Georgia	20		25	117092	6.88%	6.09%	0.018%	0.021%	21.9%
38	Ohio	47		33	170016	10.61%	9.97%	0.028%	0.019%	-30.4%
39	West Virginia	3		8	54971	3.96%	3.63%	0.006%	0.015%	154.6%
40	Tennessee	8	13		102449	5.82%	5.28%	0.008%	0.013%	61.5%
41	Oklahoma	6	6		47334	8.44%	7.73%	0.013%	0.013%	-5.4%
42	Texas	27	29		230956	6.70%	6.02%	0.013%	0.013%	-2.8%
43	Illinois	12	18		158829	9.05%	8.30%	0.008%	0.011%	47.6%
44	South Carolina	15	7		62094	8.55%	7.98%	0.024%	0.011%	-53.8%
45	Mississippi	10	8		72423	4.64%	4.29%	0.014%	0.011%	-19.9%
46	Indiana	5	7		63729	9.91%	8.98%	0.008%	0.011%	32.5%
47	District of Columbia	4	1		12371	6.31%	5.55%	0.033%	0.008%	-75.5%
48	New Mexico	1	2		29124	7.87%	7.38%	0.004%	0.007%	86.2%
49	Pennsylvania	25	12		199513	8.52%	7.86%	0.013%	0.006%	-54.7%
50	Louisiana	4	1		100640	5.73%	5.53%	0.004%	0.001%	-75.7%
51	Delaware	0	0		7819	11.74%	10.33%	0.000%	0.000%	0.0%

 

Even the top states show very low active PASS plan use when compared to the total number of people that might benefit.  Montana, the top state, shows just .276% of SSI recipients between 18-64 using the PASS Work Incentive in September 2003.  The fact is that every state has tremendous room to improve.  Also disappointing is that the percent of SSI recipients (18-64) working declined from 2001 to 2003 in every state and in the District of Columbia..  Even with the national unemployment rate rising, people with disabilities are not provided the “right” supports to increase their employment levels.  Although all use is low, it should be noted that some states have made significant increases in percent of PASSes increased from 2001.  However, many other states show a significant decline in use (last column, Table 1).

 

 

Systems are beginning to change

 

On June 22, 1999, the United States Supreme Court held in Olmstead vs. L.C. that the unnecessary segregation of individuals with disabilities in institutions may constitute discrimination based on disability. The court ruled that the Americans with Disabilities (ADA) Act may require states to provide community-based services rather than institutional placements for individuals with disabilities.  The official summary of that decision can be seen at:  http://supct.law.cornell.edu/supct/html/98-536.ZS.html.

 

This decision had far reaching consequences at both the federal and state level.  See http://www.protectionandadvocacy.com/lcolmste.html for information about the development of state-level plans for moving unnecessarily institutionalized persons into the community with support.  That same website has information on subsequent case law and on tools that advocates and states can use in developing state plans.

 

The decision has implications for many programs, including those involving employment, housing, medical care, and other aspects of daily living.  On June 19^th, 2001, President George W. Bush issued an Executive Order based on the Olmstead decision that is having far reaching consequences.  The Executive Order can be seen at: http://www.whitehouse.gov/news/releases/2001/06/20010619.html.

 

On June 19, 2001, the Department of Housing and Urban Development (HUD) announced its new pilot programs for Independent Living and Home Ownership for people with disabilities.  The announcement can be seen at: http://www.hud.gov/news/release.cfm?content=pr01-061.cfm.

 

The federal agency that administers the Medicaid and Medicare programs is reviewing all of its regulations, policies and previous guidance to assure that they are compatible with the requirements of the ADA and Olmstead decision, and facilitate States' efforts to comply with the law.  See http://www.cms.hhs.gov/olmstead/ for more information about the efforts of the Centers for Medicare and Medicaid Services (CMS).

 

On March 25, 2002 Health and Human Services (HHS) Secretary Tommy G. Thompson presented to President Bush reports from nine federal agencies entitled "Delivering on the Promise: Compilation of Individual Federal Agency Reports of Actions to Eliminate Barriers and Promote Community Integration".  The reports, published on the HHS website at www.hhs.gov/newfreedom, outline more than 400 specific solutions agencies can implement to support community living for the nearly 54 million Americans living with disabilities.  The reports stem from the first comprehensive federal review of barriers preventing people with disabilities from living in their communities instead of in institutions which was undertaken in response to President Bush's Executive Order on Community-based Alternatives for People with Disabilities and the President's New Freedom Initiative.

 

HHS's Office of Civil Rights has a list of links to information about State initiatives relevant to the Olmstead decision.  It can be found at: http://www.hhs.gov/ocr/olmstates.htm.

 

And finally, the National Conference of State Legislatures has published a report detailing the responses of the States to the Olmstead decision.  It can be found at: http://www.ncsl.org/programs/health/forum/olmsreport.htm.

 

 

Some States are choosing WorkWORLD to help manage government and policy complexities:  WorkWORLD Decision Support Technology assists individuals to find safe paths to self-support and self-determination.

 

Self-determination principles will be hard for people to achieve without using tools like WorkWORLD** Decision Support technology (Hill et. al. 2002). WorkWORLD is software and services designed to support people with disabilities and their advocates to make critical decisions about gainful activity (employment/entrepreneurship) and the use of Work Incentives, taking into account Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, Medicare, Section 8 rental assistance, and Food Stamps.

 

WorkWORLD software allows people to learn about policies that may affect them and to try ambitious “What If?” scenarios to see how their choices can affect their cash benefits, net income, access to health care and other risks and opportunities.  People use the software to create sample situations, refine their plans, avoid risky situations, reduce fears of gainful activity, evaluate options, create reports, graphics, and proposals for better communication with agency representatives (Hine et al 2003).  There are a growing number of independent users in almost every state.  WorkWORLD is available free by request or by downloading the software at http://www.workworld.org/ (made possible by a contract from SSA).  Many individuals with disabilities, benefits consultants, vocational rehabilitation counselors, job coaches, volunteers, parents, educators, and others are discovering the usefulness of the software.

 

Many potential users, however, may be intimidated by the complexity of the policies that WorkWORLD covers.  Although WorkWORLD explains those policies as simply as possible, and although the software contains tutorials and extensive "Help" information detailing how to best use WorkWORLD, many potential users feel the need for hands-on training provided by experts.

 

·        State agencies and non-profit organizations in many States have asked ESI to provide such training either directly to users or to their own trainers, who then offer training to consumers, benefits counselors and others.

 

·        Many of the users who have mastered WorkWORLD have been delighted by the information it contains and the calculations it performs, but they recognize the fact that WorkWORLD does not contain more information about the many State benefit programs that affect consumers who want to work.

 

·        A growing number of state agencies have agreements with ESI to integrate information and calculations pertaining to their State-specific benefits.  The current version of WorkWORLD contains Iowa, Massachusetts, South Carolina, Oklahoma, Georgia, and Virginia state-specific information.  The first Delaware-specific version will be released by Summer 2004.

 

Some State leaders who have seen WorkWORLD in use or who have attended WorkWORLD demonstrations have noted the software's usefulness as an educational and policy-development tool.

 

·        State leaders in Virginia, Delaware, Pennsylvania, and South Carolina have arranged with us to give WorkWORLD demonstrations of the effects of the various policies on the benefits and net income of people with disabilities who use Work Incentives and go to work.

 

WorkWORLD has been recognized by innovating state leaders as an efficient way of ensuring that Benefits Specialists and others: (1) gather sufficient information about consumers' current benefits to ensure that people receive accurate and individualized information; and (2) generate plans that take into account the effects on consumers' benefits and net income of using Work Incentives and going to work.  Such plans, when confirmed by the agencies that administer their benefits, can greatly alleviate the fears of consumers about the effects of work on their benefits and income.

 

Freedom to establish a personal self determined plan is one needed characteristic, as Nerney proposes, but a clear understanding of the implications of each alternative as people progress through life is unlikely without the use of advanced technology like WorkWORLD.  The complexities in disability-related social policy prevent all but the most gifted individuals from being true “experts.”  WorkWORLD helps people understand all the implications and options within confusing policy situations.

 

Today, very low percentages of people with disabilities use their benefits and Work Incentives effectively to achieve greater self-support.  Fortunately, new State and Federal initiatives are beginning to value investment in self-determination.  Helping people to access and manage their benefits and Work Incentives is highly compatible with self-determination principals.  The outcome is a win-win situation both for taxpayers and people with disabilities as leadership demonstrates a more balanced system/individual “power” approach.

 

*Description of Work Incentives:

 

Plan for Achieving Self-Support (PASS)

Authority: Statutory and Regulatory--Social Security Act §§1612(b)(4)(A) and (B), §1613(a)(4); Regulations 20 CFR 416.1112, 416.1124, 416.1161, 416.1180 - 416.1182, 416.1210, 416.1226, 416.1227. The following is excerpted from SSA’s web site at: http://www.ssa.gov/work/ResourcesToolkit/elements.html

Elements of a PASS: A PASS must:

·        Be in writing,

o       Preferably on form SSA-545 (can be obtained at:
http://www.ssa.gov/online/ssa-545.pdf)

o       Be signed by the individual, and, if applicable, the representative payee

·        State a work goal:

o       Must be specific (e.g., carpenter, computer programmer)

o       Can be VR assessment

o       "Getting a degree" or "buying a car" are not acceptable “goals.”

o       Reasonable chance of achieving goal, considering strengths and abilities

·        Contain a reasonable time frame

o       Must have projected beginning and ending dates

o       Must have milestones indicating interval steps

o       Last step must indicate how job will be obtained

·        Have expenses that are necessary to achieve the work goal

o       Must have additional expenses other than everyday living expenses

o       Expenses must be reasonably priced

o       Major expenses (e.g., vehicle) can be paid through down payment and installment payments

o       Expenses must be paid by beneficiary

 

 

Impairment Related Work Expenses (IRWE)

Authority: Statutory--Social Security Act §1612(b)(4)(B) Impairment Related Work Expenses (IRWE):  If an individual must incur certain work-related expenses because of an impairment, such expenses reduce countable earned income at the rate of $1 for every $2.  More information at http://www.ssa.gov/work/ResourcesToolkit/workincentiveschart.html#SSPPWW

 

Blind Work Expenses (BWE):

If SSA considers you statutorily blind, you can have your actual benefit amount increased by up to 100% of all your work expenses, whether or not those expenses are related to your disability.  You can claim transportation expenses, the cost of lunch at work, and even the taxes you pay because of earnings.

 

If your SSA Claims Representative agrees that your claimed work expenses can be included in a BWE, you may be able to recover up to 100% of those expenses by increasing your SSI check up to its maximum.  Exactly how much your SSI benefit may increase depends on your living situation, your earned and unearned income, and the amount of your BWE.  For more information see Section 2170C of the SSA Handbook.

 

SSI Work Incentive - 1619(a) SSI Cash Benefits for those earning SGA

To become eligible for Supplemental Security Income (SSI) you must be unable to engage in Substantial Gainful Activity (SGA) because you have a medically determinable physical or mental impairment (one that is expected to last for at least 12 months).  Once you become eligible for SSI, however, SSA wants to encourage you to work as soon as you are able.  SSA, therefore, does not automatically take away your eligibility if you subsequently go to work and earn more than the SGA amount.

 

Instead, SSA reduces your cash benefit $1 for each $2 of earnings above SGA, just as it does for earnings that are less than SGA but more than the $65 Earned Income Exclusion (plus any part of the $20 General Income Exclusion not applied to unearned income).  To qualify for this incentive, a person must:

• Have been eligible for an SSI payment for at least 1 month before they began working at the SGA level;
• Still be disabled; and
• Meet all other eligibility rules, including the income and resource tests.

 

Eligibility for SSI will continue for as long as the person meets the basic eligibility requirements and the income and resources tests.  If your State provides Medicaid to people on SSI, you will continue to be eligible for Medicaid.

 

SSI Work Incentive - 1619(b) Continued Medicaid Coverage

Medicaid eligibility in most states is based on SSI eligibility criteria.  The 1619(b) incentive provides continued Medicaid coverage for SSI recipients when their earnings become too high to allow an SSI cash payment.  To qualify for this incentive, a person must:

·        have been eligible for an SSI cash payment for at least one month;

·        Still meet the disability and non-disability requirements;

·        Need Medicaid in order to work; and

·        Have gross earned income, which either is below a predetermined state threshold level or, because of individual medical expenses, is insufficient to replace SSI, Medicaid and any publicly funded attendant care.

 

There are 11 States (Connecticut, Minnesota, North Dakota, Hawaii, Missouri, Ohio, Illinois, New Hampshire, Oklahoma, Indiana, and Virginia ) that use their own eligibility rules for Medicaid which are different from the SSA's eligibility rules for SSI.  These States require that a person have fewer resources or have other more restrictive criteria for Medicaid eligibility.  If a person lives in one of these States, they will continue to be eligible for Medicaid under the section 1619(a) & (b) if they were eligible for Medicaid in the month before they became eligible for section 1619.

 

See pages 42 through 45 of SSA's 2004 "Red Book on Work Incentives" for more information.  The Red Book serves as a general reference source about the employment-related provisions of Social Security Disability Insurance and the Supplemental Security Income Programs for educators, advocates, rehabilitation professionals, and counselors who serve people with disabilities.  Available at: 
http://www.ssa.gov/work/ResourcesToolkit/redbook.html

 

** WorkWORLD (WW) is decision support software for personal computers designed to help people with disabilities, advocates, benefit counselors, and others explore and understand how to best use the work incentives associated with the various Federal and State disability and poverty benefits.

http://www.workworld.org/

 

References:

Head, M. (2001) Pre and Post Costs in Michigan's Self-Determination Initiative. Unpublished manuscript. Lansing, MI (information excerpted from (Nerney, 2001) Filthy Lucre: Creating better value in long term supports: see reference below)

Hill, Mark L, David J. Ruth, Michael J. Hine, Robert M. Carlson, Simone Worden Jones, P. David Banks, and James L. Troxell (2002) WorkWORLD Decision Support: Applying Innovative Business Technologies to Help People with Disabilities Succeed at Employment: Employment Support Institute, School of Business, Virginia Commonwealth University http://www.bus.vcu.edu/esi

 

Hine, M.J., M.L. Hill, D.J. Ruth, R.M. Carlson, P.D. Banks, and J.L. Troxell, Empowering Persons with Disabilities with Decision Support Technology. Forthcoming in Communications of the Association for Computing Machinery (CACM), New York, New York.

 

Nerney, Thomas (2001), Filthy Lucre: Creating better value in long term supports, Center for Self-Determination, Detroit Michigan: http://www.self-determination.com/publications/lucreprint.htm

Nerney, T. (1998).  The poverty of human services: An introduction/Choice and control of employment for people with disabilities. National Program Office on Self-Determination.  http://www.self-determination.org/

 

Social Security Administration, Office of Policy, Office of Research, Evaluation, and Statistics: Supplemental Security Income (SSI) Disabled Recipients Who Work, Quarterly Report, Septermber 1995-2003

 

Social Security Administration, Office of Policy (2000). http://www.ssa.gov/statistics/cos/pdf/2000/1e2.pdf

 

Social Security Handbook, Web version (2004).  [Complete text available at URL: http://www.ssa.gov/OP_Home/handbook/ssa-hbk.htm

 

Southern Collaborative on Self-Determination (1997). Declaration of self-determination. [Complete text available at URL: http://cdl.unch.unc.edu/asanc/ie/SDNewsletter%20Final.htm]

 

VCU Benefits Assistance Resource Center (2003). Information as Empowerment: The Experiences of the First 50,000 Individuals Participating in the National BPAO Initiative.  [Complete text available at URL:  http://www.vcu-barc.org/reportarchive.html]

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