Focus on Respite and PCS

Nursing, Respite, and Personal Care Services Focus Group Results


During our Parent to Parent/CSHN Focus Group to assess services and supports, families identified issues around nursing care, personal care, and respite as particularly challenging. In response, Parent to Parent invited these families to another focus group, specifically designed to better understand these issues and to brainstorm strategies for addressing these issues.

20 families attended the focus group held on September 23, 1999 at the Burlington Holiday Inn.

Families responded to the Opportunity Statement:

"How might we provide more flexible, family-centered, in-home services so families who have children with special needs will have their needs met?"

ISSUES AND BARRIERS: In-Home Nursing Care & Personal Care Attendants

  • Shortage of Personal Care Attendants (PCA) & nurses  
  • High Turnover of staff  
  • Low Pay for providers who then leave for higher pay (hospital)  
  • No back-up or substitute PCA  
  • No benefits (travel healthcare, continued education)  
  • Lack of training  
  • PCA's are limited to what they can do  
  • PCA's can do programs, not just Personal Care Services  
  • Little supervision, staff evaluation and checks  
  • Late notice of schedule change  
  • Can't save or accrue allotted hours  
  • Agencies only provide the money, not the PCA's  
 
  • Parents do much of the work to get PCA's (advertising, interviewing, scheduling hours, training PCA's to care for their child, teaching caring nurses)  
  • Agencies get big % of Medicaid dollars  
  • Parents have to pay out of pocket at the beginning  
  • Some emotional disorders are not covered  
  • Medical Model doesn't fit family needs  
  • Need a system that isn't medical in nature  
  • State wants to use Medicaid because of high % that federal kicks in  
  • Nurses are not "valued" by peers for in-home nursing care  
  • Business model (nursing) supports institutional model  
  • Moves nurse to where higher-paying contracts are  
  • Nurses need to stay current on other areas of their profession to keep their certification and need to move on to other jobs 

ISSUES AND BARRIERS: Respite Care Services:

  • Inconsistent respite policies (i.e., services, payment, flexibility, etc.) across agencies/systems, counties  
  • Different pay for different respite services/not paid enough  
  • Case managers aren't always adequately trained (general vs specific)  
  • Take significant % of the funding off the top and provide minimal case management  
  • Parents do the thinking, planning, etc., and that translates to case manager  
  • No list of current providers  
  • Respite only specified for special needs child not family needs  
  • No coordination of services at higher levels  
  • You only find out about services if you ask  
  • Funds are too limited, aren't "flexible"  
  • Services are diagnosis specific vs function specific  
  • Respite funding is based on both income and specific diagnosis, not on individual family need  
  • Funding can disappear  
  • Sliding fee scale exists for non-waiver cases  
  • Non-availability to services / No bodies  
  • Criteria set for "high-end" cases  
  • Not viewed as preventative services - reactive only to crisis 

Potential Solutions:

The group was asked to provide "no-holds-barred" solutions for the issues/ barriers presented above. Suggestions were recorded with participants prioritizing strategies.

Systems Changes:

  • Increase in livable wages and benefits for Personal Care Service (PCS) and respite providers was the most popular suggestion  
  • Tax credits and tax exemptions for families who use these services  
  • Consistency across systems and single statewide policy governing PCS and respite services  
  • Changes in eligibility requirements to reflect functional need instead of diagnosis; eliminate Medicaid's Medical Model and pro-active (therapeutic) eligibility instead of re-active eligibility due to crisis  
  • Other Solutions Mentioned:  
  • PCS providers should be able to provide transportation  
  • Allow people under 18 to be paid as PCS and respite providers  
 
  • Funding:  
  • Flexibility in funding  
  • Participant Directed Attendant Care Program (PDAC) as a state model  
  • Voucher system to pay parents directly so they can pay their provider directly, manage their own cases, and get credit for doing so  
  • Allow funding to be used as respite for other children so parents can have quality time with their special needs child  
  • Change policy that denies a family to carry unused hours over to the next week or the inability to "cash" the hours in to buy needed equipment or specialized toys for their child  
  • Eliminate the "middle man." Allow families to hire PCS/respite providers directly, scheduling backups for professionals who don't show up for their shifts, etc.), limit administrative monies for programs paid to professional agencies, pay parents a bonus for finding PCS and respite providers 

Awareness and Education:

Educate legislators and professionals providing services about the needs regarding PCS and respite. Match a legislator with a family with special needs to enable them to understand the experiences of families. Educate professionals as early as possible:

Professional Incentives:

Increase professional incentives to enable trained, competent, and caring professionals to stay employed in this aspect of their careers. Families felt strongly about the need to increase the respect and incentive for providing respite and Personal Care Services.

Communication, Outreach, Awareness

Increase knowledge of and access to PCS/respite Services.

Quality Standards

All PCS/respite programs maintain a specific measure of standard guidelines.

Next Steps:

Parent to Parent sent this information to focus group attendees, as well as to interested organizations and agencies. A meeting was held with providers of in-home care including VNA, PNS, Home Health, Dept. of Aging and Disabilities, and Fletcher Allen Hospital to discuss this focus group report and brainstorm solutions to the caregiving issues. This report was also discussed at the VT Coalition for Disability Rights (VCDR) Family Support Committee meeting at which six other organizations "signed on" to work collaboratively to address the caregiver issues faced by so many VT families. They are: ARC, TASH, VT Federation of Families for Children's Mental Health, VT Parent Information Center, Protection and Advocacy, and VT Center for Independent Living.

We all recognized the need to inform legislators about the caregiver issues and on October 19, a mother whose son has muscular dystrophy testified before the Health Appropriations Committee to tell her family story regarding the shortage of qualified caregivers, low wages paid to them, misinformation about services, and the need for flexibility. If YOU have a story you would like to share, please let us know.

We will keep you posted as the legislative session gets underway. ©

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