During the summer of 1984, I completed a four credit Special Field Project as a student intern at the Arrowhead Regional Development Commission. They had obtained a grant from the McKnight Foundation to work towards increasing the number of non-mentally retarded developmentally disabled persons receiving Supplemental Security Income (SSI) in Minnesota. Historically, we have shown a low usage rate of SSI, ranking 44th nationally in per capita utilization. The intended approach was to distribute an informational brochure, develop media coverage of the problem, and present two workshops on the financial needs and planning within the target population.
On the recommendation of a member of the grant review committee, a study to determine the causes of Minnesota's low usage rate was included. Neither the State Developmental Disabilities Planning Office nor leading professionals in the field had the answer to this basic question. It seemed logical to define what the problem was before attempting to solve it. I was hired to conduct an appropriate study, the outcome being the Supplemental Security Income (SSI) Working Paper which follows.
As you will note, there is no summary or conclusion section at the end of the study. I felt the interpretation of the findings should be left to the Developmental Disabilities Planner at ARDC who was responsible for carrying out the work plan of the grant. It was fairly obvious the study failed to provide adequate support for the premise that lack of information was the major reason behind Minnesota's low usage rate of SSI. Towards the end of my internship, the current DD Planner made the decision to resign from her job in order to return to direct client services. I was offered the position, and began my new duties on September 4. In so doing, I inherited the task of revising the grant to reflect the study's findings. I have included a short summary of the revised work plan which was submitted to, and accepted by the State Developmental Disabilities Planning Office.
LITERATURE REVIEW
After an extensive search of the UMD and Duluth Public library, I discovered no formal data on the subject other than that published by the Division of Supplemental Security Studies, Office of Research and Statistics and the Social Security Bulletins. The only directly related study I found was the "Analysis of Nonparticipation in the SSI Program" which is discussed in detail starting on page 15. I personally question the validity of applying this analysis to the current issue. The data was gathered ten years ago just after the entire program was instituted. Because I could find little previous applicable literature, I relied on a key informant survey to develop possible theories on the cause of the low usage rate, and used SSA research and information supplied by local offices to substantiate or disprove these theories.
I did attempt to conduct a small survey of disabled individuals who might be eligible for, or receiving, SSI. I met with the supervisor of the local Division of Vocational Rehabilitation office, and he promised their cooperation in having new clients complete the survey. However, they failed to follow through, and the limited time I had in which to finish the study did not allow for another attempt. I feel this survey might have been a very useful addition to the Working Paper.
SOCIAL DEVELOPMENT
Social development has been defined in a variety of ways, and I feel no single definition is completely sufficient. The one which comes closest to capturing the flavor of this complex idea is Hollister's (1977) social development as "the process of planned institutional change to bring about a better fit between human needs and social policies and programs." (p. 10). The McKnight Problem Solving Grants, which funded this study, are a true effort at planned change to the existing service system. This particular grant will go on to train effective advocates for disabled persons who need help negotiating the
sometimes incomprehensible SSI bureaucracy. As a direct service worker, I was an eye witness to the frustration and depersonalization my clients felt in trying to deal with the system. I often felt inadequate when helping people to respond to forms and letters, in trying to understand the process well enough myself to explain it to others, and in fighting unjust and arbitrary decisions. Now I feel I can have a real impact, working towards improving the situation instead of only reacting to it.
Although this grant is but a small part of my job, it is indicative of the opportunity I feel I have to bring about planned institutional change in this region. I see the social development paradigm as slowly becoming the accepted philosophy underlying social services. It is exciting to know I may be in the right place at the right time to help facilitate this process.
The Arrowhead Regional Development Commission is conducting a study to make sure eligible persons are receiving the financial assistance available to them. You can help by answering the questions below.
YOU 00 NOT NEED TO SIGN YOUR NAME. THIS INFORMATION WILL BE KEPT CONFIDENT I AL .
1.) Have you ever heard about Supplemental Security Income or SSI? YES NO
2.) Have you ever applied for SSI benefits? YES NO
3.) If you applied, did you receive SSI benefits? YES NO
4.) If not, did you ask for reconsideration or file an appeal? YES NO
5.) Did you know that you could take action if you were turned down for SSI? YES NO
6.) If you have any questions about SSI or need help making an application would where you go for help?
7.) -- Is your monthly income below $200 if you are single or $300 if you are married? YES NO
8.) Have you been unable to work regularly for the last three months? YES NO
9.) What do you consider to be your disability?
ARROWHEAD REGIONAL DEVELOPMENT COMMISSION
200 ARROWHEAD PLACE
DULUTH, MINNESOTA 55802
PHONE 218/722-5545
TOLL FREE 800-232.0707 .
The Arrowhead Regional Development Commission received a McKnight Problem Solving Grant to address the issue of financial assistance to non-mentally retarded developmentally disabled persons, specifically through the Supplemental Security Income (SSI) program. On the advice of a member of the grant review committee, a revision was made to begin with a study into the reasons behind Minnesota's low usage rate of SSI by blind and disabled people. Based on the findings presented in the working paper, the focus of the grant appears to have shifted from increasing consumer awareness to strengthening and expanding the advocacy system. We feel the following proposals will have a significant long-term impact.
I. Provide comment on, and support for, the Department of Human Services' proposed emergency rules on "special advocacy assistance."
- ARDC will submit written-statement in support
- ARDC will make available information on the proposed rules and how to comment on them to appropriate area agencies and organizations.
II. Workshop to be held for the purpose of effective advocates for their clients. making present service providers Topics may include:
-Understanding of SSI and MSA
-Application and appeal process
-How SSA determines eligibility
-Gathering and presentation of-evidence of disability
-How to effectively deal with SSA forms and procedures
-Available resources to clients and providers.
III. Development of an "Advocates Guide to SSI" including SSA publications and forms, a listing of resources, and other helpful information.
- Guide will be made available to workshop participants and any other interested individuals or organizations.
MCKNIGHT PROBLEM-SOLVING GRANT
Supplemental Security Income (SSI)
Working Paper
ARROWHEAD REGIONAL DEVELOPMENT COMMISSION
200 Arrowhead Place
Duluth, MN 55802
This project is funded, in part, through a grant from the Governor's Council on Developmental Disabilities with funds made available by the McKnight Foundation.
I. INTRODUCTION
The Arrowhead Regional Development Commission's Developmental Disabilities Program received a McKnight Problem-Solving Grant to address the issue of financial assistance to non-mentally retarded developmentally disabled persons, specifically through the Supplemental Security Income (SSI) program. On the advice of a member of the grant review committee, a revision was made to include a study into the reasons behind Minnesota's low usage rate of SSI by blind and disabled people. By attempting to define the problem at the outset, it can be more effectively addressed in the later portions of the grant. Methodology used to obtain information included library and document research, and a key informant survey. As the scope of this study is relatively limited, the results are in the form of indications rather than hard data.
II. TARGET POPULATION
Estimating the target population within the five county area covered under the grant is not an easy task. The generally accepted definition of a developmental disability is a physical or mental disability that is severe and chronic, appears before age 22 and results in limitations in a least three life areas. This definition does not lead to a precise category of identifiable persons, and could be interpreted to cover a wide range of disabling conditions and situations. There exists no established and agreed . upon prevalence estimates to use, nor are there exact non-MR DD population counts for comparison. The following is a "best guess", derived from a number of different sources.
PREVALENCE
Standford Research Institute
(National prevalence, low estimates, 1977)
Orthopedically Impaired.065
Hard of Hearing.3
Deaf.075
Visually Impaired.05
Other Health Impaired.065
.55%
The Governor's Council on Developmental Disabilities in Minnesota uses a prevalence for planning purposes of 2.75% of total population as developmentally disabled. Both the Stanford Research Institute and the U.S. Department of Education (1979) estimate a prevalence of 2.3% for mentally retarded persons. Subtracting the prevalence for mental retardation from the prevalence for all developmentally disabled, the resultant figure for non-MR DD is .45%
Sources: Kaskowitz, D. et al., Validation of State Counts of Handicapped Children, Menlo Park, CA: Sanford Research Institute, 1977; Proqress Toward a Free Appropriate Public Education, A Report to Congress on the Implementation of Publlc Law 94-142: The Education for All Handicapped Children Act, Office of Special Education, U.S. Department of Education, January, 1979, pp.16-17.
INCIDENCE
Minnesota Unduplicated Child Count Percentage of K-12 Public Enrollment 1981-82 1982-83 1983-84
Physically Handicapped .18 .18 .18
Hearing Impaired .17 .20 .21
Vision Impaired .05 .06 .05
Other Health Impaired .11 .10 .09
Autistic .02 .02 .02.
Minnesota and Region III Unduplicated Child Count K-17 Public and Private Enrollment on December 1, 1983
Region III* Minnesota
Physically Handicapped .194 .170
Hearing Impaired .126 .193
Vision Impaired .047 .051
Other Health Impaired .076 .087
Autistic .025 .016
Deaf/Blind .005 .002
*Region III consists of the five counties covered in the grant plus Koochiching and Itasca counties.
Source: Minnesota Department of Education
ADULT POPULATION (18 yrs. +) GRANT AREA COUNTIES
Aitkin 9,679
Carl ton 20,658
Cook 3,018
Lake 9,247
St Louis
Total
Source: 1980 Census
By using a range of estimated percentage of total population, a low of .45% and a high of .55%, the number of non-MR- DD adults in the grant area should fall somewhere between 921 to 1,126. Included in this target population are SSI participants, certain others who are eligible for benefits but do not receive them, and the remainder are ineligible due to too high an income and/or having a disability considered not severe enough to meet SSI standards. As SSI usage data is only broken down into three categories - aged, blind and disabled - it is impossible to determine how many non-MR-? DD adults receive, or are not receiving benefits. Therefore, it would be safe to assume the target population is represented within the disabled population and conclusions drawn from information based on disabled people as a whole will be valid also for non-MR DD persons.
III. KEY INFORMANT SURVEY
The Supplemental Security Income program (Public Law 92-603) was enacted on October 30, 1972. The primary goal of the new program was to provide basic financial support to the aged, blind and disabled using nationally uniform eligibility standards and payment levels. Some of the objectives of SSI included:
"An income source of last resort for the aged, blind and disabled whose income and resources were below a specified level.
Eligibility requirements and benefits standards that were nationally uniform and eligibility determination based on objective criteria.
Incentives and opportunities for those recipients able to work or to be rehabilitated that would enable them to escape from their dependent situation.
An efficient and economical method of providing this assistance.
Inducements to encourage states to provide supplementation of the basic Federal benefit."
Source: J. Trout and D. Mattson, A 10 - Year Review of the Supplemental Security Income Proqram. Social Security Bulletin, January 1984, Vol. 47, No.1
USAGE DATA
Historically, Minnesota has shown a relatively low usage rate of SSI as compared to other states. In 1982, Minnesota ranked 44th nationally in per capita utilization versus Wisconsin's ranking at 25th. Blind and disabled adult recipients totaled 32,710 in Wisconsin, but numbered only 16,865 in Minnesota or approximately half as many. Both states are similar in population and culture. To determine if the discrepancy in SSI usage was exhibited locally, a comparison was made between the number of recipients served by the Superior, Wisconsin and the Duluth, Minnesota SSA offices. As shown in the following table the Superior SSA office averaged 13 recipients per 1,000 population, whereas the Duluth office averaged eight recipients per 1,000 population. Clearly, the trends which appear at the state level are evident in the grant area.
Duluth SSA Office Area
Superior SSA Office Area
AGENCIES CONTACTED
In order to discover possible contributing factors to Minnesota's low usage of SSI, a key informant survey was conducted of area private and public agencies serving the disabled. A management level employee or a professional in a position designated to work with the developmentally disabled was contacted. In each instance, the key informant was asked if they knew of any explanation for the low usage rate, or of any differences between the Minnesota and Wisconsin service system which could account for the discrepancies.
The following is a list of the agencies contacted in Minnesota:
Legal Aid Service of Northeastern Minnesota
Epilepsy League, Arrowhead Chapter
United Cerebral Palsy
Association for Retarded Citizens - Duluth
Human Development Center
-Director of Community Support Program
-Team Leader
-Developmental Disabilities Specialist (former determiner for northern region SSA)
Vocational Rehabilitation - State of Minnesota Economic Security Department
Nearly all the key informants expressed surprise when informed of Minnesota's low usage rate of SSI. Numerous theories as to why this is true were put forward. Given further research, some ideas were substantiated and others were not. The results of the key informant survey theories and subsequent findings are summarized below.
1. Minnesota and Wisconsin have fundamentally different disabled populations.
This was not found to be true. In fact, both states were very similar in unduplicated child count and in SSI demographic data. The SSI recipients in Minnesota and Wisconsin tended to be closer in characteristics to each other than to the national average.
Unduplicated Child Count As a Percentage of K-12 Public Enrollment
December 1, 1982
Disability Minnesota Wisconsin Us.
Learning Disabled 4.87 3.48 4.32
Speech 2.66 2.30 2.81
Mental Retardation 1.93 1.69 1.93
Emotionally Disabled .82 1.23 .88
Other .53
Total 10.88% 9.24% 10.64%
Source: Office of Special Education, U.S. Department of Education
SSI Demographics 1982 Adult Disabled Recipients
Source: A.Kahn, Proqram and Demographic Characteristics of Supplemental Security Income Beneficiaries, December 1982, Office of Research, Statistics and International Policy.
2. Minnesota denies more applicants.
This theory was contradicted by data obtained from the Duluth SSA office. Minnesota was shown to have a higher percentage of successful applications then the region or the U.S. as a-whole.
3. Minnesota has more disabled persons residing in state hospitals than Wisconsin
In general, residents of public institutions are ineligible for SSI payments, However, an exception is made for patients in a public medical facility receiving Federal/State Medicaid payments on the patients behalf. A small benefit amount, $25 per month, is intended for personal use by those who have no other income because Medicaid provides for only medical and subsistence needs. Minnesota supplements this amount to $35 per month. Wisconsin allows regular benefit levels to persons living in a private non-medical facilitv where 50% or less of the cost of care ii covered by Medicaid. The theory-that a higher state hospital population would decrease the number of SSI recipients is probably false, but the total amount of payments would be lowered.
Minnesota's service system does have a bias toward long term and institutional care for disabled individuals. Comparing daily average census figure for state hospital systems in 1983, Wisconsin shows a much lower population. Minnesota reports 1,292 mentally ill patients versus 472 in Wisconsin. Likewise, Minnesota had 2,297 mentally retarded patients versus Wisconsin's 2,096. Overall, Minnesota outnumbered Wisconsin by l,021 MI and MR state hospital residents on an average daily basis. Also, Minnesota has built an extensive system of Intermediate Care Facilities for the Mentally Retarded (ICF-MR'S) funded through Medicaid dollars. These facilities are treated in the same way state hospitals are under SSI regulations. In looking at where State Mental Health Authority funds are spent, in 1981 Wisconsin used 78.5% of its budget for community-based programs and 20.7% to support state hospitals. Minnesota used 42.4% of the budget for community based programs and 57,2% for state hospitals. SSI usage data by recipient characteristics confirms these trends.
SSI Demographics Disabled Recipients, 1982 Percentage by Living Arrangements
4. Minnesota and Wisconsin use different administrative systems and eligibility criteria for SSI and state supplementation programs
This is probably the largest single factor in the low usage rate in Minnesota as compared to other states. Minnesota and Wisconsin fall towards opposite ends of the range of variations in SSI programs.
When SSI was first instituted, states were given the option of "supplementing" payments. The federal dollars would provide a floor income to all needy aged, blind and disabled individuals. The states would supplement that amount with special or emergency assistance. Each state could choose whether to have their supplementation program administered by the Federal government, by their own state, or in combination with county level government. Wisconsin went with Federal administration of their state funded supplementation program. Minnesota chose to have county human service boards administer SSI, where eligibility criteria are established at the state level, county departments determine actual eligibility and payment amounts to individuals. Minnesota Supplemental Aid (MSA) is made up of 85% state funds and 15% county funds. The cost of administration is paid by the counties, except for salary expenses which are 50% state funded. When the SSA reports usage statistics, they include only Federally administered supplementation data. Wisconsin showed 36,910 blind and disabled recipients in 1982, 29,699 of which received both Federal SSI and state supplementation, and more importantly 7,211 people who received state supplementation only. Minnesota was reported by the .SSA as having 18,920 SSI blind and disabled recipients, a figure which did not include 1,512 individuals receiving MSA only. In other words, those states who administer their own supplementation programs have recipients who are usually not included in SSI usage information.
Although SSI is based on nationally uniform eligibility standards, income levels for recipients and criteria for supplementation vary from one state to another. Wisconsin, as well as California, Pennsylvania, Michigan, New York and Massachusetts, decided the Federal benefit level was not adequate to meet living costs. They added a basic need supplement for all recipients. As the amount of the payment level was higher than the Federal rate, the state supplement income criteria was raised accordingly. Those people who met the state standard for income but not the Federal one received state supplemented SSI benefits. Minnesota decided to use a special-need and a restricted basic-need supplement. MSA provides assistance for specific diets prescribed by a physician, a newspaper subscription, transportation allowance if the need is documented, and the minimum rate for a telephone when medically necessary. On a one time only basis, MSA will pay for major catastrophic repairs to a home, repair or replacement of appliances and furniture, and moving expenses if no other monies are available. Federally administered supplementation programs cannot be more restrictive than the Federal standards, but may be more ml. However, states who administer their own programs can be more restrictive. Wisconsin has no requirement for relative responsibility for a recipient, and follows Federal SSI in income disregards and resource limitations. Minnesota requires one spouse to be responsible for the other, and parents for blind children under age 18. Income disregards are lower than Federal levels, and resource limitations are more restrictive than Federal provisions.
In summary, Wisconsin provides supplemental benefits across the board, and tends to use standards less restrictive than the Federal standards. Minnesota uses MSA to provide monies for a narrow category of special needs. and uses more restrictive standards to supply fewer people with lower supplemental-payments than Wisconsin. The following table illustrates how these policies translate into dollar amounts.
SSI for the Aqed, Blind and Disabled, 1982 (In Thousands)
5. Wisconsin is more aggressive in advocacy and outreach for people who may be eligible for SSI than Minnesota.
The key informants who had worked in the Wisconsin service system, especially those who had experience in both states, felt this to be true for several reasons. Wisconsin relies heavily on Federal programs such as SSI and AFDC for their adult categorical aid. General assistance and food stamps are limited to three months use, where Minnesota allows extensive use of these programs as well as increased subsidized housing. Wisconsin's service providers tend to be private organizations, as opposed to county welfare departments. Private community programs tend to expand into new areas of service as needs are identified. However, county social services are restricted by funding limits and bureaucratic structure that resists change. Service providers in Wisconsin have a vested interest in helping clients successfully obtain SSI. As one professional stated, "Everybody goes to appeal when their clients are turned down after initial application." Because of the heavy reliance on SSI, professionals are familiar with and more likely to take on the complex appeal process. They are, therefore, effective advocates for their clients. As a policy, Wisconsin has pushed for outreach and early intervention along with their community-based services.
The Minnesota Department of Public Welfare (DPW) stated their position in Instructional Bulletin #82-73, dated August 29, 1982 as "It is the Department's policy that the maintenance and medical needs of disabled persons should first by met by the federal DI and SSI programs established through a state/federal partnership for this purposes. This policy not only serves the disabled client, who receives a higher cash benefit and better medical and vocational services but also serves the interest of state/county programs which are neither designed or funded to met the long-term needs of disabled persons. " In order to carry out this policy, DPW requested immediate action in that the local agency director shall designate a specific staff member to assist disability applicants and appellants with the mechanics of dealing with SSA." No evidence was found in the grant area counties that this directive was ever carried out. The 1983 Minnesota Legislature has amended M.S. 256 D.06, subdivision 5, to allow counties money to provide "special advocacy assistance" to increase utilization of SSI. DPW is currently accepting comments on this rule, with an implementation target date of November, 1984.
While conducting the key informant survey, it was discovered St. Louis County Social Services (SLCSS) does have an SSI advocate of sort. An experienced social worker who has worked within the SLCSS system for many years helps disabled individuals through the SSI application and appeal process as a resource of last resort. These efforts are not formally acknowledged or sanctioned as part of the social workers duties. The availability of this advocate is virtually unknown outside the agency, and little known within it. A lone social worker has taken it upon himself to fill what he saw as an extremely important unmet need of disabled persons. He is a well informed lay person, who has had great success for his clients in the application and appeal process.
IV. NONPARTICIPATION STUDY
The "Analysis of Nonparticipation in the SSI Program" by J. Menefee, B. Edwards and S. Schieber of the Division of Supplemental Security Studies, Office of Research and Statistics, was published in the Social Security Bulletin of June, 1981. This study addressed a wide range of questions concerning participation and nonparticipation in the SSI program. Based on data generated in 1973 and 1974 by the SSA'S Survey of Low Income Aged and Disabled (SLIAD), an attempt was made to discover why of the estimated 2.4 million disabled persons eligible for SSI, only 1.3 million were participants.
A primary contributing factor found was the relative ignorance of the existence of SSI and its purpose. Only 12% of eligible disabled nonparticipants were aware of a national assistance program. Of these 12%, one quarter had applied for SSI. The study states, "The presence of only a small group of informed eligible persons and their low participation rate in the application process,. . . provided supportive evidence for the concept of the nonparticipant as an informational isolate. (A subsequent study "Recipient Awareness of SSI and Comprehension" (1976) also indicated a high degree of ignorance about SSI and who was eligible to receive it.) A social network was reported as one of two primary information sources about SSI. This reliance on person-to-person communication suggested }the possibility of misconstrued information and the difficulty of reaching both physically and socially isolated persons." A conclusion drawn from the analysis was "Knowledge or information is an important determinant of nonparticipation in any type of public assistance program and may be especially important for the SSI target population because of their limited exposure to and knowledge of public support programs. "
The study relates the Social Security Administrations attempts at outreach. In 1974, the first major effort was instituted, Supplemental Security Income Alert. Because of limited funding and time constraints, the program became a source of misinformation about SSI and resulted in referrals of many ineligible persons. Much of the confusion sprang from the more restrictive criteria used by 24 of 37 states providing supplemental programs. The Master Beneficiary Leads Project, an outreach effort conducted in 1976, was criticized for its limited effectiveness. Only persons who had work histories recorded in SSA files were contacted, missing a large portion of the potentially eligible population. The analysis goes on to say "Subsequent evaluation of these and other outreach efforts has been less then favorable and their impact on program enrollments has been limited. "
Given the general implications of Analysis of Nonparticipation, a basic strategy proposed to increase SSI participation levels is to effectively disseminate information and encourage eligible persons to enter the program. Past efforts on SSA'S part to do just this have not been altogether successful, nor are they likely to improve in the future. The reasons for this are well summarized by the authors:
"The Social Security Administration is constrained in its abilities to develop outreach efforts carefully tailored to suit the comprehensive level and background of the target population. The Social Security Administration is a Federal entity, administering multiple programs well beyond the scope of SSI alone. It is virtually impossible within this context and at current resource levels for SSA to do the personal canvassing and field work that I would be required to disseminate correct program information and overcome the stigma that many eligible individuals seemingly associate with participation in SSI. For SSA to develop the required machinery to accomplish this would mean a significant expansion in the role of its employees into the social casework area and would result in higher employment levels and administrative costs for the program. "
