Our April meeting began with an update from Marianne Beach on the directory of people who participate in the Medical Home Work Group meetings. Copies were distributed that include our mission and vision. The directory also provides a description about the services our regular participants offer. The directory is not meant to duplicate the “Hampden County for Families Program Resource Manual” or the “Family TIES of Massachusetts Directory of Resources for Families of Children and Youth with Special Needs”. We are hoping to link the materials in the directory to our blog and Facebook page. Future discussion will be conducted in September regarding a funding option of requiring a nominal fee for being included in the book.
Susan Tapases lead a discussion for the Shriners Community Health Needs Assessment Survey to which the group provided feedback. Essentially this portion of the meeting was a focus group for how Shriners can serve Hampden County families with children zero to eighteen years old with physical or developmental conditions lasting twelve months or longer. In particular, they are looking at issues surrounding quality of life, transition and family needs for special needs kids in Western Massachusetts with a specific focus on how Shriners can improve health care access and quality of care.
The group provided Ms. Tapases with feedback on a full range of topics including: specialty care, insurance, transportation, respite care, transition aged kids, and equipment and home environment. In regards to specialty care, families often meet roadblocks from the start in finding specialists and getting appointments, especially in a time conscious frame because of a lack of knowledge and long waiting lists. In addition, obtaining appointments, diagnosis and evaluations often take too long and sometimes children age out of early intervention programs before evaluations are completed. Not only that, but some parents are not well equipped to advocate for their families and aren’t aware of their rights or the options available to them. Parents typically cannot hire an advocate for their family due to resource constraints. Lastly, office hours are a challenge for working parents.
Next, the group touched upon insurance challenges. Coverage and access can vary broadly. In particular, families experience delays in neuro-psych evaluations due to insurance limitations. A portion of our families is also undocumented.
Transportation is also challenging. In Western Massachusetts there is limited access for transportation assistance, particularly for travel to non-medical places. In addition there are restrictions on who can accompany patients to medical visits while using medical transportation. Another challenge, specific to Western Massachusetts is seen in the logistics of seeing a specialist in the area, but needing to travel to Boston for testing. On a larger scale, respite care for Western Massachusetts patients requires traveling over 100 miles out of the area.
Transition-aged kids, often with learning issues or complex medical needs or mental health or substance abuse issues, who drop out of high school have little support or options.
Lastly, there is a lack of loans available for medical equipment and access to recycled medical equipment is not available. In addition there is a lack of financial assistance for home renovations to accommodate special needs.
The group discussed ideas for Shriners to better support families. Shriners can support home visits, after school care, parent support groups, and day respite. They can help parents with physical therapy and occupational therapy that can be done at home and can assist in choosing equipment.