Written By: Gracie Moore

Research and Writing Editor, American Journal of Trial Advocacy

Each year, an estimated 6,000 children are born with Down syndrome.[1]  These children learn and grow, often while utilizing programs designed to assist them in various aspects of life.[2]  However, as they seek independence in adulthood, they are limited not by their disabilities but by laws that prevent them from reaching their full potential.[3]  The president of the National Down Syndrome Society, Sara Hart Weir, reported that “[t]he poverty rate for working-age people with disabilities is 22.3 percent higher than those without disabilities.”[4]

In a new effort to fight such laws, the National Down Syndrome Society has launched the campaign End Law Syndrome.[5]  On its official website, the campaign articulates the issues as “a series of antiquated laws that impede the pursuit of a career of living independently without risking Medicaid benefits.”[6]  The Law Syndrome campaign is more than just an attempt to spread public awareness; it is a legislative bill.[7]  The four main objectives of the bill are to:

1. Seek competitive employment opportunities by increasing income limitations and ending sub-minimum wage practices; 2. [w]ork and live where they desire by creating a more portable Medicaid program with greater flexibility; 3. [b]enefit from more job opportunities driven by new tax incentives that small businesses and corporations will receive when hiring someone with Down syndrome or another disability; 4. [a]chieve economic-self-sufficiency from the expansion of successful disability programs like the National ABLE Program.[8]

The bill already has some congressional support.[9]  Republicans Cathy McMorris Rogers (Washington), Pete Sessions (Texas), and Gregg Harper (Mississippi) have all teamed up with the National Down Syndrome Society.[10]  They are joined by Democrats Jim Clyburn (South Carolina) and Joe Crowley (New York).[11]  These individuals are acting to further the objective of the bill in a bipartisan effort to effect change.[12]

Currently, access to Medicaid for individuals with Down Syndrome is governed by the type of Social Security they qualify for.  The Social Security Administration provides two types of benefit programs for those with disabilities: Social Security Disability Insurance (“SSDI”) and Supplemental Security Income (“SSI”).[13]  The policies surrounding SSI are what raise potential issues in limiting individuals’ ability to bring in income and live independently.  SSI assists individuals with disabilities as a Federal income supplement helping these individuals by providing cash for food, clothing, and shelter.[14]  Individuals who qualify for SSI must have a disability, limited income, and limited resources.[15]

The Social Security Administration provides definitions of what qualifies as income.[16]  The Social Security Administration defines earned income as “wages, net earnings from self-employment, certain royalties, honoraria, and sheltered workshop payments.”[17]  Alternatively, unearned income is defined as “all income that is not earned, such as Social Security benefits, pensions, State disability payments, unemployment benefits, interest income, and cash from friends and relatives.”[18]  It is important to know what counts towards an individual’s income and what does not, because the amount of SSI benefits is contingent upon the amount of income.[19]  The more income, the less benefit from SSI the individual receives.[20]  More importantly, if an individual’s income exceeds the limit of income allowable to receive SSI benefits, the person cannot receive SSI benefits again until his or her income has been reduced below the limit.[21]

As mentioned, to qualify for SSI benefits, an individual must have limited resources as well.  Resources for the purposes of SSI are things such as “cash; bank accounts, stocks, U.S. savings bonds; land; life insurance; personal property; vehicles; anything else you own which could be changed to cash and used for food or shelter; and deemed resources.”[22]  An individual’s “home [they] live in and the land it is on; household goods and personal effects . . .” and some trusts are not counted as resources for SSI.[23]  As with income, if at the beginning of the month an individual’s counted resources are above the allowable limit, the individual is unable to receive his or her SSI benefits for that month.[24]  For an individual receiving SSI benefits, the allowable resource limit is $2,000.[25]  If an individual has gone over the allowable limit, they may qualify in the following month if he or she is able to “sell the excess resources for what they are worth.”[26]

One particular issue that may arise in regard to resources concerns attorneys who practice in the area of estate planning.  Money that an individual receives from a trust can reduce his or her SSI benefits.[27]  Attorneys drafting wills and trusts for clients who intend to leave a portion of his or her assets to an individual with Down Syndrome should be cognizant of this issue.  Ideally, the lawyer should suggest alternative methods of leaving assets to an individual with Down Syndrome as to not affect the benefits the individual receives. One such method could be to establish a schedule for disbursement of the assets so as to not push the individual over his or her monthly allowable income and resources.

Beyond introducing the bill that explains the need for change, the End Law Syndrome held an event to show members of Congress and other influential individuals in the D.C. area the capabilities of those with Down Syndrome.[28]  This group was invited for the opening of C21, a restaurant completely run and staffed by individuals with Down Syndrome.[29]  The guests had no idea before arriving that the night was part of a cause.[30]  Those in attendance were treated to a night of excellence all designed to promote the End Law Syndrome campaign.[31]  Instead of receiving a bill at the end of their meal, guests received a pamphlet explaining the objective of the End Law Syndrome cause.[32]  The pamphlet was entitled, “The Bill is on Us[,] Changing the Law is on You.”[33]  This chance for legislators to see for themselves what is possible when individuals with Down Syndrome are given an opportunity was essential for advancing the campaign.

While SSI is an extremely helpful and valuable resource for individuals with Down Syndrome, the limitations imposed by the program could also harm them.  In order to encourage these individuals to reach their full potential and strive for independence, legislators must help them do so by changing the laws that hold them back.  The End Law Syndrome campaign is the first step in reaching this goal.  “Law Syndrome affects 100% of people with Down Syndrome.”[34]  Hopefully through the efforts of the National Down Syndrome Society and each and every person involved with the End Law Syndrome campaign, these limitations imposed by out-of-date laws can be abolished.

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[1] Down Syndrome Facts, Nat’l Down Syndrome Soc’y, http://www.ndss.org/about-down-syndrome/down-syndrome-facts/ (last visited Nov. 16, 2017).

[2] Id.

[3] Sara Hart Weir, Down Syndrome isn’t an Issue – Law Syndrome Is, The Hill (Oct. 10, 2017, 5:25 PM EDT) http://thehill.com/blogs/congress-blog/politics/354795-down-syndrome-isnt-an-issue-law-syndrome-is.

[4] Id.

[5] End Law Syndrome, https://www.lawsyndrome.org (last visited Nov. 16, 2017).

[6] Id.

[7] Weir, supra note 3.

[8] End Law Syndrome, supra note 5.

[9] Weir, supra note 3.

[10] Id.

[11] Id.

[12] Id.

[13] Soc. Sec. Admin., Pub. No. 05-10029, Disability Benefits 1 (2017), https://www.ssa.gov/pubs/EN-05-10029.pdf.

[14] Supplemental Security Income Home Page—2017 Edition, Soc. Sec. Admin., https://www.ssa.gov/ssi/ (last visited Nov. 21, 2017).

[15] Supplemental Security Income (SSI) Overview—2017 Edition, Soc. Sec. Admin., https://www.ssa.gov/ssi/text-over-ussi.htm (last visited Nov. 21, 2017).  SSI also provides assistance to individuals who are blind or 65 years old or over.  Id.

[16] Supplemental Security Income SSI Income—2017 Edition, Soc. Sec. Admin., https://www.ssa.gov/ssi/text-income-ussi.htm (last visited Nov. 22, 2017).

[17] Id.

[18] Id.

[19] Id.

[20] Id.

[21] Id.

[22] Understanding Supplemental Security Income SSI Resources—2017 Edition, Soc. Sec. Admin., https://www.ssa.gov/ssi/text-resources-ussi.htm (last visited Nov. 22, 2017).

[23] Id.

[24] Id.

[25] Id.

[26] Id.

[27] Spotlight on Trusts—2017 Edition, Soc. Sec. Admin., https://www.ssa.gov/ssi/spotlights/spot-trusts.htm (last visited Nov. 22, 2017).

[28] National Down Syndrome Society, NDSS—C21 Restaurant—End #LawSyndrome, YouTube (Nov. 16, 2017), https://www.youtube.com/watch?v=adk17-ZUNP8.

[29] Id.

[30] Id.

[31] Id.

[32] Id.

[33] Id.

[34] End Law Syndrome, supra note 5.