Children with autism become adults with autism and then "fall off the cliff" in terms of access to supportive services. With the burgeoning population of adults with disabling autism, this represents a growing, and to many families, terrifying, crisis. This recent article from the Washington Post captures just one aspect of the challenge, a shortage of direct service providers. And the other obstacles are likewise dramatic: the lack of supportive housing options, the years-long waitlists for day programs, the lack of supported employment opportunities, the paucity of good medical care, the unjust use of the criminal justice system to respond to dangerous behaviors of those with intellectual and developmental disability.
There is no easy answer to our mounting crisis. But one thing is clear —the support system of the future will be based on a network of robust and mission-driven nonprofits in each and every community. How do we foster the expansion of this network to meet the needs? Here's one idea that could help: the ECN, or Essential Care Nonprofit.
ECNs would be a new subcategory of nonprofit that provide essential, basic human care services to the most severely disabled, meriting a special designation in our federal tax code. Preferred tax treatments, along with other mechanisms, would bolster their ability to carry out their vital missions.
For the lifespan needs of adults with autism, failure is not an option. Parents can only do so much and only last so long. We need a new vision for long-term supports and many new financial and policy tools to effectuate that vision. ECNs can't solve all our problems, but could be a vehicle to expand our support networks. Check out my proposal below, and please let me know what you think.
Background: 501(c) and 501(c)(3) organizations
A 501(c) organization is a tax-exempt nonprofit organization. Section 501(c) of the Internal Revenue Code (26 U.S.C. § 501) provides that 29 types of nonprofit organizations are exempt from some federal income taxes (the "tax exemption"). Many states refer to Section 501(c) for definitions of organizations exempt from state taxation as well. In addition, 26 U.S.C. § 170 provides a deduction, for federal income tax purposes, for some donors who make charitable contributions to most types of 501(c)(3) organizations, among others (the "donor deduction").
501(c)(3) organizations encompass a broad spectrum of purposes: charitable, religious, educational, scientific, literary, testing for public safety, fostering amateur sports competition, or preventing cruelty children or animals. For example, a quilt museum, ballet company or Little League team is treated equivalently, for tax exemptions and donor deductions, to a nonprofit providing daily essential human care services to dependent adults with the severe cognitive and developmental disability.
Historically this dichotomy between cultural-type 501(c)(3)s and essential care-style 501(c)(3)s did not present a significant problem since the population of adults with this level of serious disability was small and federal and state government programs generally provided for their care in institutions, nursing homes, and community-based facilities and workshops. However, those historic realities have dramatically changed over the past decades. Today, the population of adults with autism and intellectual and developmental disabilities who cannot care for themselves has surged dramatically (expected to quadruple over the next 20 years based on California DDS numbers). In addition, government funding for essential care-providing nonprofits is severely constrained, and unable to keep up with the explosive demand. Many nonprofits serving adults with autism and I/DD are under severe financial stress, and waitlists for basic services continue to grow.
While nobody wants to return to the era of institutionalization of those with significantly disabling IDD, certain aspects of institutionalization were simply common sense and directly answered clear needs:
- Adults with IDD who lacked the ability to earn a living were not expected to pay rent or board.
- Adults with IDD were not expected to pay property tax.
- Adults with IDD were not expected to pay for their own medical care.
- Funding for adults with IDD came from the government (financially more akin to a tax credit than mere nonprofit deduction).
The time has come to acknowledge that a certain subset of nonprofit organizations provide such essential, basic human care services to the most severely disabled—services once considered basic functions of government— that this subset deserves a special designation in our tax code that will bolster their ability to carry out their vital missions.
The Essential Care Nonprofit (ECN) would be a new designation under 501(c). The IRS would approve organizations as ECNs in the following circumstances:
- The organization provides direct care services to adults (18+) with autism and/or I/DD deemed at risk of institutionalization owing to substantial functional and cognitive limitations. This is the same eligibility criteria used in Medicaid HCBS waiver programs.
- The services provided could include any of the following: aide support, day programs, supported employment programs, housing, medical care, daily living coaching, and behavioral and other forms of therapeutic care.
- At least 75% of the organizations' expenditures must be on those direct support activities. Other expenditures could be for overhead or serving the needs of others with disabilities.
- ECNs would have special annual reporting and audit requirements to ensure adherence to IRC rules.
- Donor credit instead of donor deduction: Donors would be eligible for a full tax credit on donations up to $50,000 per year, as opposed to tax deductions.
- ECNs could feature a special rule that explicitly allows family members to create and manage ECNs that serve the care needs for I/DD adult family members in addition to others eligible adults.
- ECNs would of course be exempt from federal income taxes.
- ECNs could be eligible for government-contracted purchasing rates.
- ECNs could be eligible for special Labor and Immigration rules responsive to the particular needs of this population.
- ECNs could be made exempt from some state and local taxes, including property taxes, depending on the response of states and local agencies.
- ECNs could be made the object of special HUD and other programs to encourage development of new housing options.