Comment on file code: CMS-2229-IFC

Submitted Electronically: February 18, 2008

Abigail Schindler, Graduate Assistant

Institute on Disability and Human Development

University of Illinois at Chicago

1640 W. Roosevelt Rd.

Chicago, IL 60608

Marguerite Schervish

Department of Health and Human Services,

Attention: CMS-2229-P

P.O. Box 8016,

Baltimore, MD 21244-8016.

RE: (CMS-2229-IFC) Medicaid Program; Self-Directed Personal Assistance
Services Program State Plan Option (Cash and Counseling)

Dear Ms. Schervish:

The Institute on Disability and Human Development (IDHD) at the
University of Illinois at Chicago appreciates the opportunity to comment
on the proposed Self-Directed Personal Assistance Services Program State
Plan Option for cash and counseling (CMS-2229-IFC). IDHD, a University
Center for Excellence in Developmental Disabilities Education, Research,
and Service (UCEDD), is dedicated to promoting the independence,
productivity, and inclusion of people with disabilities in all aspects
of society. Self-directed personal assistance services (PAS) empower
individuals with disabilities to live independently, one of the primary
goals of our organization.

This proposed rule is strengthened by its commitment to give consumers
with disabilities decision-making authority in recruiting, hiring,
scheduling, and purchasing PAS. Preliminary findings from cash and
counseling programs show that consumers are more satisfied with this
type of care arrangement and are less likely to report unmet needs.^1^
In addition to this, the attention paid to ensuring that the development
of individual service plans is person-centered and directed reveals that
this program is attuned to the wants and needs of individuals who use
PAS.

**441.480 Use of a Representative**

Section 441.480 of the proposed rule explains that individuals under
this program are permitted to, and may be mandated to, use a
representative who will assist them in planning, development,
management, and direction of their service plans and budget. Section
441.480(b) goes on to prohibit using this representative as a paid
provider of services, in order to prohibit "conflict of interest."
However, in many cases, the person appointed as representative will be a
parent or other family member of the individual. Previous studies have
shown that individuals prefer to hire family members and others they
already know as personal assistants.^2^ This rule, then, will disallow
many individuals from hiring their first choice of personal assistant.

**42 CFR 441.450(c) Legally Liable Relatives**

While §441.480(b) prohibits the use of a "representative" for PAS, 42
CFR 441.450(c) allows individuals to hire "legally liable relatives,"
including parents, guardians, and other caretakers. Who individuals
under this program are permitted to hire for PAS is unclear given the
apparent contradiction of these two sections.

**Conclusion**

We recommend that §441.480(b) be eliminated or amended in order to allow
individuals served under this program to have genuine choice in the
hiring of PAS. Allowing individuals to hire legally liable relatives is
in the best interest of those served, while prohibiting the use of
"representatives" as personal assistants does not. Again, IDHD
appreciates the opportunity to comment on the proposed Self-Directed
Personal Assistance Services Program State Plan Option for cash and
counseling. We urge that the comments in this letter be seriously
considered during the development of this proposed rule.

Sincerely,

Abigail Schindler

Graduate Assistant

Institute on Disability and Human Development

University of Illinois at Chicago

^1^Carlson, B. L., Dale, S., Foster, L., Brown, R., Phillips, B. &
Schore, J. (2005). Effect of consumer direction on adults' personal care
and well-being in Arkansas, New Jersey, and Florida. Mathematica Policy
Research, Inc.

^2^Stainton, T. & Boyce, S. (2004). \'I have got my life back\': users\'
experience of direct payments. *Disability & Society, 19 (5)*, 443-454.