Please accept these comments regarding a few select portions of the currently proposed Waiver Redesign Regulations.

Introduction

My 36 year-old son functions on the lower end of the autism spectrum. He is mostly non-verbal, and has lived in Virginia virtually all his life, at home with both parents. He has never had siblings.

During his later years in special education he benefited from, and somewhat prospered under, the pre-vocational transitional plans included in his later IEPs. But Congress did not amend IDEA to require any pre-vocational goals in IEPs as part of a student’s FAPE until 1997, and did not strengthen those requirements until 2000, when my son was 15 and 18 years of age, respectively. By the time he aged out of special education in 2004, he was still developing vocational skills; albeit slowly, because hampered by sensory and behavioral deficits stemming from his lower functioning level of autism.

So we, his parents, selected a vocationally oriented day program (“sheltered workshop”) in which he could continue this development throughout his early adult years on the DD Waiver. However, we misunderstood the waiver funding rules: we expected that he would have a 1:1 personal attendant, or job coach, paid through the DD Waiver independently from the workshop’s staff, available to guide his vocational activities for portions of at least 2 or 3 days a week.

Alas, we were wrong. Worse still, that particular day support provider’s ability to initiate and supervise vocational activities for clients with my son’s level of functioning has diminished over the years. Now, a decade and a half later, he is noticeably even lower functioning with respect to his vocational/occupational skills and abilities than he was in 2004. Unfortunately, there are few, if any, alternatives because sheltered workshops and similar arrangements are losing favor, and my son is gradually “slipping through the cracks.”

Supported Employment/Vocational Skills Training

Accordingly, I am saddened and very alarmed by the following language which appears in the February 4, 2019 proposed regulation at page 1482 [Vol. 35, Iss. 12, Va. Register]:

And then again at page 1485 of the same document:

This is disheartening considering the dearth of vocational and employment opportunities available to adults who are trainable, but limited nonetheless by DD/ID deficits falling below the categorical mean. Under Virginia’s waiver redesign proposal, this population risks being further ignored and stigmatized, and their day support providers risk becoming little more than “babysitters.”

The DD Committee of the Arlington CSB states in its comment (filed 4/4/19, 11:32 a.m.) that “[n]ew Workforce Innovation and Opportunity Act (WIOA) regulations have eliminated sheltered workshops and clustered [sic.] employment opportunities.” This is not entirely true. The provisions of WIOA, signed into law by President Obama in July 2014 (when my son, an Arlingtonian, was about to turn 32 years old), which affect sheltered workshops [Sec. 511, codified at 29 U.S.C. § 791 et seq.] do not target cloistered vocational arrangements per se, but only sub-minimum wages previously permitted under the Fair Labor Standards Act, 29 U.S.C. § 214(c). Moreover, § 511 of the WIOA prohibits payment of sub-minimum wages to “an individual with a disability who is age 24 or younger . . .” at the time of enactment, subject to various enumerated exceptions applicable only to that age group (24 or younger, at enactment). Hence, § 511 does not apply to my son.

Yes, § 511(b)(1)(B) of the WIOA states that, as a rule of construction, “[n]othing in this section shall be construed to . . . preference employment compensated at a subminimum wage as an acceptable vocational rehabilitation strategy or successful employment outcome[ ] . . . .” Yet, in enacting WIOA, Congress could not possibly have intended that severely cognitively challenged adults who, like my son, aged out of special education after having benefited from a mere few years of limited exposure to pre-vocational transition planning—due to Congress’ own tardiness in requiring it—should now be expected to prosper as private sector employees without further ongoing pre-vocational training, and without subsequent personalized and concurrent behavioral support in the workplace. Nor did Congress likely intend that this particular population should henceforth spend all day engaged solely in leisure activities, sequestered from meaningful and dignifying vocational activities, such as some activities formerly achievable within the Virginia Training Centers (e.g., greenhouse horticulture, and related arts & crafts). Compare Innisfree Village (Crozet, VA) http://www.innisfreevillage.org/

Accordingly, I agree with what the DD Committee of the Arlington CSB appears to further state, within the same paragraph: “Job discovery[, being] evidence-based [and] cost-effective [when adequately funded] . . . can help individuals [receiving day support] find their potential for paid work. [But] . . . limit[ing] . . . this service . . . [to a mere 24 billable hours] . . . [restricts] an important bridge to employment, and is likely [therefore, fiscally wasteful]. Other comments, too, appear to encourage flexible and, where appropriate, overlapping funding for supported employment services, locations, and providers. For example, Jennifer Campbell of VersAbility Resources (4/3/19, 3:58 p.m.) advocates that 12VAC30-122-400 should specify Employment Services Organizations (ESOs) as qualified providers of Peer Mentor Support Services; and further encourages amendment of that section at ¶ C.3. to specify that Supported Employment is “permitted in an individual’s home for purposes of self-employment, or . . . (telecommuting, etc.)[.]” Similarly, Beth Martin, of The Choice Group (4/3/19, 2:39 p.m.) advocates that 12VAC30-122-460 - Personal assistance service - be amended at ¶ A.3. to add that “Personal Assistance can be provided simultaneously with supported employment services and can be billed concurrently[.]” Jennifer Campbell’s comment, cited above, also advocates for this same language at 12VAC30-122-460.A.3. These are all good suggestions, and I support them fully.

Support Coordination/Case Management

However, I do not support the proposal made by several comments that the term “autism” be eliminated from the section header for 12VAC30-50-490 (Support Coordination/case management for individuals with developmental disabilities, including autism.). Under DSM-V, the diagnostic criteria for Autism Spectrum Disorder (ASD) (299.00) remain separate from, and unsubsumed by, the diagnostic criteria for Intellectual Developmental Disorder (IDD) (5 different codes, depending on level of severity). Even though they are often co-morbid conditions, ASD and IDD should not be conflated by Support Coordinators/Case Managers because the imposition of inappropriate and time-wasting services will likely result. This is already happening to my predominantly ASD son (who exhibits also at least some level of IDD); his day support provider is attempting to teach him sign language along with a group of his IDD peers. But he has for years communicated with pic-sym tools, and with his limited vocal vocabulary. Apparently, he merely watches others do their signing, and then reverts to self-stimming behaviors. Thus, it does not appear that exposure to sign language technique is in any way augmenting his vocational skills.

Despite that 12VAC30-50-490.C. states that “CSBs or BHAs shall contract with private support coordinators/case managers[,]” several comments, mostly from CSBs, have advocated substituting the word may for shall. I agree with the proposed language (shall), except that it should specify a minimum number of private support coordinators/case managers with whom CSBs and BHAs must contract (preferably more than one wherever possible, to avoid antitrust scrutiny). Notably, Lucy Beadnell of the Virginia Ability Alliance (3/7/19, 10:56 am) commented that “[w]e would like to see the regulations for Support Coordination to be identical for all people eligible for the DD Waivers, including the option for privately contracted Support Coordinators.” Similarly, Michele M. Elliott, MSW commented (4/4/19, 1:53 p.m.) that “[i]ndividuals who are awarded a waiver slot should be given a choice between CSB Support Coordination or a private Supports Coordination entity the CSB contracts with, regardless of diagnosis.” I wholeheartedly concur, but would add that family members and guardians should have access to these contracts, or at least to an independently accessible, fully accurate listing of the public and private entities with whom the local CSB/BHA has contracted for Support Coordination/Case Management services (as well as Services Facilitation, where applicable). Otherwise, family members and guardians will be unable to assess and verify with confidence the full extent of their options.

Conclusion

This proposed Waiver Redesign has been many years in the making, and was originally introduced as a plan to “merge” Virginia’s DD and ID waivers. The United States Supreme Court’s opinion in Olmstead v. L.C., which initiated this proceeding, was handed down 20 years ago this June. Obviously, this Redesign has been a daunting task and several of the comments are breathtakingly substantive; thus indicating that there is still some distance to go. By comparison to many of them, my suggestions here are meager—but important to my family. Thank you for considering them.