HEALTH TEAM PRIORITIES

Priority #1 : Ensure that people who are Deaf or Hard of Hearing are provided with effective communication in hospitals and other health care settings.

Rationale: Although the ADA and other federal and state laws require health care providers to provide effective communication, including sign language interpreters, TTYs, and closed-captioned TVs, to people who are Deaf and Hard of Hearing, many such people are denied communication access in health care settings. As a result of the denial, they are severely limited in their ability to communicate with health care providers and may be mis-diagnosed or receive inadequate treatment.

Priority #2: To improve the MassHealth prior approval decision-making and appeal process.

Rationale: Individuals with disabilities who are MassHealth eligible must go through a seemingly increasingly arduous and arbitrary process to obtain needed services and equipment to live and work in the community. Many people do not understand the process or how to protect their rights in that process. Many do not appeal when they are denied, requiring time consuming resubmissions.. Access to DME is important to the ability to live and work in the community. There are few resources for legal representation on MassHealth prior approval denials. Private lawyers do not take these cases because there is no source of payment, and legal services programs have experienced staff reductions. Legal representation is necessary both to obtain needed equipment and services for clients and to improve decision-making and procedures.

Priority #3: To improve access to private duty nursing services for children for whom MassHealth has determined these services to be medically necessary.

Rationale: Private duty nursing (PDN) services enable children with severe disabilities to live at home with their families. However, Massachusetts children approved for PDN services are unable to find nurses to fill an average of 20 - 30% of approved PDN hours. This puts them at risk medically and for institutionalization. Parents must provide the care that a nurse would provide when nurses are not available, resulting in reduced employment, lack of sleep, family problems and fatigue.

Priority #4: Improve/preserve access to affordable pharmacy services for disabled individuals not eligible for MassHealth coverage.

Rationale: Access to affordable pharmacy services is often crucial to maintaining the ability to live and work in the community. The Massachusetts budget crisis threatens to result in restrictions and/or higher out of pocket costs in programs that offer pharmacy services to people with disabilities.

Priority #5: Prevent/ameliorate coverage/service limitations in MassHealth programs for people with disabilities.

Rationale: Access to MassHealth covered services is important to the ability of many individuals with disabilities to live and work in the community. The Massachusetts budget crisis has resulted in increased scrutiny of the MassHealth program as a source of savings. Changes have been proposed to increase premiums, add premiums for lower income recipients, add co-pays, add asset tests, restrict the disability standard, and eliminate use of the medical improvement standard for continuing eligibility reviews. These changes will limit participation in MassHealth for people with disabilities, contrary to recent federal recognition of the importance of access to health care to the ability to live and work in the community.

Priority #6: Ensure that DMA is using correct disability standard and applying it correctly for both adults and children.

Rationale: There is some evidence that DMA has become more restrictive in applying the SSI disability standard for adults, although it is not clear that it has gone outside the bounds of what the SSI disability standard allows. It is now denying more people, but it has been generous in its application of the standard in the past. It also appears that DMA has no process for determining childhood disability under the standard it must use - yet has allowed the vast majority of cases. Last year, DLC worked with HLA and GBLS to provide disability standard training to a panel of private attorneys who had agreed to take cases pro bono. DLC agreed to mentor attorneys who took cases. Since MassHealth is so important to community living for many people, we should monitor this situation carefully and consider taking appropriate cases for representation.