PO Box 249
San Mateo, CA 94401
Centers for Medicare & Medicaid Services
Department of Health and Human Services
P.O. Box 8013
Baltimore, MD 21244-8013
January 9, 2017
Re: Response to CMS Request for Information on Home and Community-based Services
Dear CMS staff:
Thank you for this opportunity to provide input into home and community-based services. The availability of HCBS long-term care services for the burgeoning population of adults disabled by autism is one of the most pressing issues, if not the most pressing issue, facing our autism community and one of the greatest social services challenges of our time. Children with autism become adults with autism, and here in California the numbers of adults with severe forms of autism who would require institutionalization absent community-based alternatives is surging dramatically: state data show this population will fully quadruple in the next 20 years, reaching about 100,000 individuals (in contrast, there were only a few hundred such adults in the early 1980s).
This autism tsunami is unprecedented and potentially catastrophic as parents of the autism boom age, grow infirm, and die. Our children are often individuals who cannot care for themselves and will be perpetually dependent on care provided by others, owing to severe deficits of functioning, cognition and behavior. The autism community needs a federal funding stream that is responsive to this dire reality and flexible enough to address a wide range of needs, while also retaining as much efficiency and leveraging of other resources as possible.
With that unprecedented reality in mind, here are our responses to CMS’ questions:
A: What are the additional reforms that CMS can take to accelerate the progress of access to HCBS and achieve an appropriate balance of HCBS and institutional services in the Medicaid long-term services and supports (LTSS) system to meet the needs and preferences of beneficiaries?
Value person-centered diversity of options. The needs of adults with autism are extremely diverse and range from full institutionalization to independent living in generic residences with occasional coaching. Medicaid-fundable options should include the full array of services in the settings as driven by the beneficiaries’ particular choices and circumstances, including congregate and disability-specific settings. Policies that favor generic “any old apartment” solutions plainly penalize those with more significant disabilities and support needs.
End arbitrary limitations that drive up costs and drive away options. Here in the Bay Area living costs, real estate costs and personnel costs are extremely high. We desperately need Medicaid funding that that is supportive of the reality that exceedingly few housing and program options are available to adults with autism. We must smash barriers to access, not erect new ones. Arbitrary limitations on settings are discriminatory, squelch the development of new options, and can compromise the health, safety and happiness of adults with developmental disabilities. Individual choices, clinical needs, and residential realities must be paramount
End any “settings” requirement as applied to private properties. Under law, Medicaid must presume private settings to be compliant with regulations. Neither CMS nor the states possess any no legal authority to review and de facto license private residences for compliance with any laws. To the extent a person-centered plan is not being effectuated, that review takes place at the level of the individual PCP and not at the level of the property itself (over which CMS has no jurisdiction).
CMS must adhere to the actual language of Olmstead. Militant advocates have distorted the plain language of Olmstead in a way that threatens significant harm to many of our most disabled citizens. Many adults with autism have lifelong needs that require high levels of care and autism-specific programming, set-up and design—nothing in Olmstead restricts access to these options. Many adults with autism are plainly incapable of engaging in competitive employment and will continue to rely on sheltered workshops and facility-based day programs. It is dangerous, reckless, immoral, and illegal under the ADA to eliminate important options, including ICFs/IID, sheltered workshops and facility-based day programs – that many of our most disabled individuals rely on and prefer. From Olmstead: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." Olmstead v. L.C., 527 U.S. 581, 601-602 (1999).
Heightened scrutiny must be eliminated. Heightened scrutiny is an unlawful mechanism and example of government overreach whereby CMS retains unbridled closed-door administrative discretion to disapprove services delivered in a setting deemed too congregate or disability-serving. This process does not comport with basics of due process, was not subject to proper vetting under applicable federal administrative procedures, and only serves to discourage important and viable options for adults with autism. Instead of heightened scrutiny of settings (over which CMS has no jurisdiction anyway), CMS should emphasize the important idea that each Medicaid funded plan contain the appropriate person-centered elements and that no adult with autism or I/DD should be forced to reside, work, or receive services in a congregate or disability-specific setting unless the individual prefers that setting.
B: What actions can CMS take, independently or in partnership with states and stakeholders, to ensure quality of HCBS including beneficiary health and safety?
The person-centered plan is the ideal way to ensure beneficiary health and safety. Every plan should include the list of safeguards to ensure the beneficiary does not become the subject of physical, sexual, financial, emotional, or nutritional abuse or neglect, is receiving proper medical care, and has multiple layers of supervision on “eyes” on him or her at all times.
Those too cognitively impaired to report abuse should have the option of an Abuse Prevention Plan, or APP, listing, among other elements, the following measures:
• The identities of the staff supervisors ultimately responsible for ensuring safety on a day to day basis
• Training program for all staff working with the beneficiary
• Methods for staff to cope with severe behaviors and aggression of adult autistic beneficiaries
• Technology, including cameras and recorders, to track the 24/7 activities of the beneficiary
• Day to day activities to ensure the beneficiary is not social isolated and has access to plentiful enriching activities either with others with disabilities or in the general community, as may be desired and appropriate
• Daily nutrition logs to prevent nutritional neglect
• The APP should also put in place measures to prevent financial neglect, theft, and other non-physical harms
• For severely impaired females, Rape and Abuse Prevention Plans (RAPP) must be created to protect the most vulnerable members of our society from molestation, rape and pregnancy
C: What program integrity safeguards should states have in place to ensure beneficiary safety and reduce fraud, waste, and abuse in HCBS?
Here in Northern California we have not witnessed fraud and waste in HCBS programs serving adults with autism. To the contrary, the vast majority of our adult autism-serving nonprofits are operating on a shoestring, doing heroic work providing essential life services to some of the most difficult to serve members of our society, running a deficit. They are unable to attract new workers or expand their services (in spite of swelling demand) due to the abysmal reimbursement rates.
D: What are specific steps CMS could take to strengthen the HCBS home care workforce, including establishing requirements, standards or procedures to ensure rates paid to home care providers are sufficient to attract enough providers to meet service needs of beneficiaries and that wages supported by those rates are sufficient to attract enough qualified home care workers.
This is probably the single most important issue we are facing—the dismal pay rates for direct service providers. We regularly hear from our families and professionals of the impossibility of finding staff for day programs or home programs, the high turnover, the lack of funding for training, and the nonexistence of funds to pay staff for overtime. Minimum wage is insufficient to attract qualified staff given the high stress, isolation, and physical dangers of many of these jobs. Applicants would rather work at Starbucks or in janitorial or in the restaurant sectors.
CMS needs to be region-sensitive. The SF Bay Area is exceptionally expensive yet we have as many autistic adults as any other area. CMS rates need to be competitive with other professional caregivers in our area.
Thank you for this opportunity to provide our comments.
Very truly yours,